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Social care policy responses to covid-19 have shown how quickly new data gathering practices and infrastructure can be rolled out. For instance, the adult care home Capacity Tracker has become the de-facto way of monitoring thousands of care homes in England and Wales. Initially built to help administrators, case workers and families find available beds from an often-bewildering choice of thousands of residential care providers, in the early months of covid-19, the tracker was adapted to monitor bed capacity and levels of infection nationally. This data influenced decisions about how resources such as protective equipment were distributed to care homes in England and Wales.

Data Saves Lives, the government’s recovery strategy for data in health and social care lauds the Capacity Tracker as one of the pandemic’s data success stories. But as a piece of infrastructure, it remains unfinished and the full impact of its use remains under-researched—for instance impacts on the well-being of residents and the burdens it places on staff. 

The Capacity Tracker is a market instrument designed to efficiently discharge people leaving hospitals and entering community care. One major problem with this is that the tracker counts stocks of beds and resources. What’s missing is information about who is flowing through the system, details about residents in each home, where they’ve come from, and how healthy are they. 

Health systems experts call this an after the bottom number in a fraction. It happens in the care sector because there is significant uncertainty about the care and wellbeing of individuals and groups within the overall care population. If decision makers don’t know the denominator they quickly end up with problems in the precision of assessment, the evaluation of services, and in the evidence base for policy. 

This is made worse by digital infrastructure within care homes: roughly three in every four care homes are still paper based. And while residents are known to GP systems, information stored on paper, or in free text digital records cannot easily be linked to NHS Digital data or made available to inform local authority or national level decisions. 

The good news is that work is under-way to solve the denominator problem, triangulating existing population and public health data, with systematic evidence-gathering at a community level and across social groups: trials for minimum data sets can potentially produce data in care homes in ways that matter to users and carers and build human capabilities and frameworks for collating and interpreting these data; experimental testbeds like Care City and research projects like Supporting Adults Social Care Innovation, show how innovation in care practices and procedures, coupled with wider organisational and institutional changes in the sector, makes data useful and usable to staff and residents on the ground. 

These approaches redefine what better care data is by complementing static measures of system performance with data on the context of care in the community—interpreting population and clinical data in these contexts and contributing data on low pay, high staff churn and blocks on migration that currently hamper the sector; and making these data useable for statutory responses to inequality and deprivation. 

Yet social, political and institutional hurdles remain. Critical will be aligning advances in care home data with broader transformations across health and social care, such as service integration, between health and social care and further linkage of datasets across public sectors and local authorities. An integrated system would allow detailed monitoring of staffing levels, sickness levels and other data points for care staff and residents. 

But the technical task of linking datasets, a trend accelerated during covid-19, needs ethical diligence to ensure the values and interests of care home residents, staff and operators are commensurate with whatever work the data is put to. This is important because data are imprinted with the value judgements of those choosing what data to collect, and those consenting to that collection. Also, values guiding data collection and interpretation in clinical settings often differ from those prioritised in care homes and other social care sites. 

The risk today is two-fold. First, that in a rush to lock-in the data “gains” made during covid-19, the basics digital needs of the care sector are neglected. There is a real danger that integration and interoperability are seen as the key goals—whereas for thousands of care homes simply getting the basics in place must be the priority. Second, opportunities to debate the terms of data-linkage could be missed. For instance care sector data was largely absent from the terms of reference of the Goldacre review, which aimed to continue recent momentum in health data linkage. But momentum is a function of speed and direction. 

As we adapt to living with covid-19, there is an opportunity to steer the benefits of these transformations so they are equally directed at health and social care settings. This is critical if transformations in data are to contribute to reform in a fragmented and forgotten care sector. Increasing digital maturity and capabilities in the social care sector must be a pre-condition of increased integration and interoperability. These are vital if social care is going to share any value created by broader digital transformations.

Cian O’Donovan is a researcher at UCL’s Department of Science and Technology Studies working as part of the AHRC-funded UK Pandemic Ethics Accelerator. Twitter: @cian

Competing interests: none declared

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Covid-19 has killed nearly five million people worldwide and is still raging. The quest for effective treatments continues, especially for older populations and those with underlying health conditions, who are at greatest risk of hospitalisation and death. In this phase III trial, high risk patients (those with at least one risk factor for disease progression such as being older than 55 years old, diabetes, obesity) with mild to moderate covid-19 who received a single infusion of the monoclonal antibody sotrovimab were less likely to be hospitalised for any reason or die within a month compared with those who received placebo (3/291 (1%) v 21/292 (7%)). There was no significant difference in adverse events (17% v 19%). The numbers are too small to make any great claims; only three people in total were hospitalised in the sotrovimab group, and uncommon adverse events may not have shown up. In theory, sotrovimab should be safe because it’s made from an antibody from a patient who recovered from covid-19 and targets an antigen on the virus (not the human host). This was only an interim analysis, and the trial is ongoing.

N Engl J Med doi:10.1056/NEJMoa2107934

Covid immunity waning in Israel

This study from Israel found evidence of waning immunity among vaccinated adults who had received two doses of the Pfizer covid-19 vaccine. The national database showed that people who had had the second dose when their age group was first eligible were more likely to have covid in the study period (11-21 July 2021) than those who had had the second dose two months later (rate ratio of around 1.6 for all age groups over 16). The rate ratio for severe disease was 1.8 in the over 60s, 2.2 in 40-59 year olds, and too small to calculate in the 16-39 year olds. Cases of covid-19 in Israel had all but disappeared in May, only to resurge by July as the dominant alpha variant was replaced by the delta variant (98% of cases). It’s likely that vaccine efficacy wanes over time and is less effective against the delta variant, but this study couldn’t distinguish between the two factors. Either way, these results led to a decision to offer a booster to anyone who had a second jab more than five months previously.

N Engl J Med doi:10.1056/NEJMoa2114228

A third covid jab provides an effective boost

Over 700 000 Israeli citizens with a median age of 52 years who were eligible for a booster dose of the Pfizer covid-19 vaccine more than five months after their second dose were matched with a control group. One week after the booster, vaccine effectiveness was estimated to be 93% for admission to hospital (231 events for those who had received just two doses versus 29 events among those who had received three doses), 92% for severe disease (157 v 17 events), and 81% for covid-19 related deaths (44 v 7 events). This study was observational, so the possibility of unmeasured confounding factors exists, and the possible harms of a third dose (such as myocarditis) weren’t explored.

An editorial discusses the dangers of global vaccine shortages, which could leave under-vaccinated countries susceptible to covid-19 and create the conditions for new variants that may come back to haunt the thrice-vaccinated countries.

Lancet doi:10.1016/S0140-6736(21)02249-2, doi:10.1016/S0140-6736(21)02388-6

Measure what needs to be measured: the pitfalls of surrogates

This important meta-analysis of 144 randomized clinical trials and over a million participants found that, just because treatments reduced the incidence of non-fatal myocardial infarction, they can’t be assumed to have reduced all-cause or cardiovascular mortality. Specifically, non-fatal myocardial infarction was not a surrogate for all-cause mortality in primary, secondary, mixed primary and secondary prevention, or revascularisation trials. The study highlights the danger of inferring too much from surrogate endpoints. It’s possible that, over time, improved diagnosis and prevention treatments meant that many non-fatal myocardial infarctions were no longer associated with increased mortality, but even studies from before 2000 (when high sensitivity troponin assays were introduced) failed to show a correlation between the effects of treatment on non-fatal myocardial infarction and reductions in all-cause and cardiovascular mortality.

JAMA Intern Med doi:10.1001/jamainternmed.2021.5726

Platelet-rich plasma injections for ankle osteoarthritis don’t work

Ultrasound guided platelet-rich plasma (PRP) injections—using a patient’s own platelets—into the ankle joint didn’t improve ankle symptoms and function in patients with ankle osteoarthritis over 26 weeks compared with placebo, according to this small Dutch trial. Ankle osteoarthritis may only affect 3.4% of the adult population, but it’s more common than hip and knee osteoarthritis among younger people, and there’s no effective, non-surgical treatment. Adverse effects were more common in the PRP group than the placebo group, who had an ultrasound guided intra-articular saline injection (13 v 8 events). Other PRP products may work better, although it’s hard to see why they would, and there was no information about other therapies that patients may have had (such as physiotherapy). On the basis of this study, I certainly wouldn’t let anyone inject PRP into my ankle.

JAMA doi:10.1001/jama.2021.16602

Ann Robinson is an NHS GP and health writer and broadcaster

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As online publishing developed, many academic journals allowed open access, costs being paid by the authors—in practice, by the universities and grant-giving bodies—and quality was maintained by editorial control and peer review. But financial predators saw this as a way to make money, since many people will pay to be published, and we are now being exposed to material that is dubious or incorrect. The number of predatory journals has increased since Beall’s original listing (Jeffrey Beall is an American librarian and library scientist, who first coined the term “predatory journals”), and more are using hijacked material. [1] This became apparent to me from the increasing number of emails received from journals I’d never heard of. The most revealing were invitations, sticky with flattery – “Dear Professor, I found your profile had a dynamic potential which fascinates me to email you.” Three or four of these now arrive daily, pleading for submission of a piece in any form and on any subject I choose; I am to be an instant expert in any branch of medicine or surgery. The commercial give-away is that whatever I write must be submitted in just a few days, because one single article is needed to complete an issue for which fees have already been collected. 

These absurd invitations provided me with the perfect opportunity to explore profit and editorial control. So, tongue in cheek, I replied to some that, having been invited, I presumed they would pay me a writer’s fee, and how much would it be? The reply was there was a misunderstanding, and I was expected to pay $2000 for publication, but a discount would be given. Haggling increased the discount even further. I tested other invitations by replying that as the piece was needed to complete an issue I would consider writing it if the fee was waived; a full or partial reduction was usually agreed. 

Clearly, then, the primary concern of pirate journals is financial; but what about quality? All the journals I examined presented an impressive format, claiming that all submissions would be considered by independent reviewers. But the short time to publication made this unlikely, so to test this, I replied to invitations “I can consider putting things aside to do the article only if you can guarantee its publication.” A typical reply was: “We will guarantee for its publication”—so much for independent reviewing.

When payment is the criterion, quality comes second, which is why we are being increasingly exposed to the academic branch of the fake news family, with its low quality, un-refereed submissions. But a new development in predatory publishing was revealed when I came across an article falsely purporting to have been written by me. The publisher has not responded to requests to have this forgery taken down, and neither the postal address nor phone number given by the publisher are real. It seems that predatory journals now write their own “submissions” when needed. We must deal with this before it spreads further, with the added risk of undermining genuine academic publishing—but how? 

We cannot stop the practice; that will happen only if and when our culture loses the primacy of money; but we can reduce its malign effect by increasing awareness of the problem and improving its detection—most pirate journals are new, and have a poorly edited, banal content, but they are becoming more sophisticated and less easily recognised. Awareness is important for people new to journal publishing and grant-giving and government bodies that award funding on the basis of publication quantity rather than quality; but this will need care so that it does not add to the atmosphere of disbelief that fake news has already provoked. 

Finally, and tedious though it may be, the decisive tool can only be certification of academic reliability. To achieve this, academic publishers will have to collaborate with universities, professional societies and industry, to set up a body such as a Council for Academic Publication, to review and certify a journal’s acceptability. Approved journals could carry the emblem of approval, and an electronic reference confirming that material viewed or downloaded is from an approved journal. 

Exposure and isolation of  predatory pirate journals is urgent; it will need funds and a concerted effort to minimise the problem; such an approach could even make some pirates walk the plank to oblivion.  

Sam Shuster, emeritus professor of dermatology, Woodbridge, UK.

Competing interests: none declared.

1  Macháček V, Srholec 2021, M Predatory publishing in Scopus: evidence on cross‑country differences. Scientometrics https://doi.org/10.1007/s11192-020-03852-4

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Although one member of the FDA’s independent advisory committee called the approval “a dangerous precedent,” sadly, the approval of aducanumab doesn’t establish a “precedent.”  A similar, less public process of drug approval, to which I was a central witness, unfolded 10 years ago in 2011.

First, a few words about aducanumab. The FDA approved it based on a “surrogate” marker: a measurement that may (or may not) predict an outcome of interest, but which provides no evidence of clinical benefit. The surrogate marker was the reduction, during treatment with aducanumab, of plaques of the protein “amyloid” in the brains of individuals with Alzheimer’s disease. The FDA claimed in its official press release that this reduction is “reasonably likely to predict a clinical benefit.” However, while amyloid plaques are generally assumed to cause cognitive decline, there is uncertainty as to whether reducing amyloid plaques in the brain protects patients from cognitive decline. Previous trials of drugs which reduce amyloid plaques in the brain have shown no clinical benefit. Aducanumab is associated with potentially harmful side effects. Notwithstanding all this, the FDA granted “accelerated approval” for Aducanumab. Biogen now has to do a post approval trial to confirm any clinical benefit, which could take years.  This means profits will be reaped before Biogen is called upon to show evidence that Aducanumab has a positive effect on cognitive decline in patients with Alzheimer’s.  

In licensing aducanumab, the FDA ignored the advice of its own independent advisory committee. To date, three of the committee members have resigned in protest. 

But as controversial as all this is, it doesn’t set a “precedent.”  One was established over 10 years ago, with the approval of a drug aimed at treatment for thalassemia, a common blood disorder affecting hundreds of thousands of children in the world’s poorest countries.  

In 1989, I began clinical trials of an experimental drug, deferiprone, to treat children with thalassemia. My publicly funded trials were later supplemented by funding from Apotex, a pharmaceutical company, whose CEO was Barry Sherman. Two years later, while continuing the trials, I recognized problems with the drug’s safety.  Sherman threatened me with legal action should I inform patients or publish my concerns, and prematurely and abruptly terminated both clinical trials, thereby avoiding generation of further data potentially adverse to his interests. I nonetheless proceeded to inform my patients and publish my concerns. This 25 year saga became arguably Canada’s most publicized—and certainly its most enduring—biomedical research scandal. It even went on to form the basis of a John Le Carré thriller.

Over years, those threats of legal action from Sherman ultimately led to lawsuits. In 2009, he applied for approval of deferiprone from the FDA. In his application Sherman urged the FDA, as he had to the European Medicines Agency 10 years before, to ignore my concerns about the drug’s safety, because according to Sherman, not only had I allegedly falsified trial data, but I’d committed thousands of “protocol violations” in the conduct of the trial.  

The FDA commissioned its Department of Scientific Investigation to conduct an inspection of my original trials. Over a week, the FDA inspector conducted a painstaking inspection of all my clinical data, confirmed concerns about the safety of deferiprone that I’d been struggling to raise for years and showed that Sherman’s allegations were unfounded. After examining all the data, the inspector reported that with respect to my trials’ primary (non-surrogate) endpoint of effectiveness, liver iron concentration, Sherman had submitted data to the FDA that had excluded 45% of subjects.

The most immediate outcome of this conclusion was that the FDA rejected Sherman’s application. The FDA also informed Sherman that, given that my trials had been terminated prematurely, there existed no adequate studies of effectiveness for deferiprone. The FDA therefore demanded at least one additional prospective, randomized, controlled clinical study to verify the effectiveness of deferiprone.

Sherman demanded that the FDA approve the drug based on selected data from older studies which, as in the case of aducanumab, had used a surrogate marker of “effectiveness.”  Ignoring its own written findings, the FDA issued “accelerated approval” for deferiprone (albeit as “last resort” therapy.)  Asked whether the FDA had ever issued approval based on data of such poor quality, an FDA official responded as follows: “Not that I am aware of.  I want to make sure this doesn’t establish a precedent.”

Despite this chapter in the FDA’s history, when I discuss the approval of aducanumab with colleagues or patients, I often hear: “But it must be safe and effective  because the FDA approved it.”  This is troubling to anyone who has borne witness to what an FDA approval means, and what it doesn’t mean.  

Some readers might be surprised that the FDA is paid by Pharma—that the very industry the FDA has a duty to regulate supplies 65% of its budget used for the drug approval process. Or that pharma employees, “consultants,” and “independent patient voices” press hard and successfully for drug approvals.

The stories of aducanumab and deferiprone are not the only ones leading many sensible people to an inevitable question: what function does the FDA now serve?  

More questions are being asked: in September 2021, US Congress issued its first public request to the FDA for data and documents related to the approval process of aducanumab.

Now, more than ever, we need regulatory agencies that don’t simply conjure up profit-generating hope, but approve products as safe and effective, because they are safe and effective.

Nancy Olivieri, a physician and a professor of pediatrics, medicine and public health sciences at the University of Toronto. Twitter: @DrNancyOlivieri

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Levels of non-alcoholic steatohepatitis (NASH), which can progress to fibrosis and cirrhosis, are rising in parallel with the increase in obesity and diabetes. Apart from lifestyle measures such as weight loss, there are no specific drug treatments. In this phase IIb trial, patients with non-cirrhotic, highly active NASH were randomised to receive 1200 or 800 mg of lanifibranor (an agonist that modulates key pathways in the pathogenesis of NASH) for 24 weeks or placebo. Those receiving 1200 mg showed significant improvement in a composite score of histological NASH activity (SAF-A score) compared with those on the lower dose or placebo. Lanifibranor at both doses improved resolution of NASH without worsening of fibrosis compared with placebo (49% and 39%, respectively, v 22%). There were more adverse effects such as diarrhoea and nausea with the active drug than with placebo, but no difference in the drop-out rates (around 5% in all groups). A larger, longer phase III study including a more diverse population is now needed.

N Engl J Med doi:10.1056/NEJMoa2036205

Tread carefully with tramadol

This large Spanish retrospective cohort study found that a new prescription (not issued in the previous year) of tramadol was significantly associated with a higher risk of all-cause mortality (hazard ratio 2.31), cardiovascular events (hazard ratio 1.15), and fractures (hazard ratio 1.5) compared with a matched cohort who were prescribed codeine. There was no significant difference in the risk of constipation, delirium, falls, opioid misuse or dependence, or sleep disturbance. Despite the use of propensity score matching (a statistical technique that uses artificial control groups to estimate the impact of an intervention), there was a real risk of residual confounding, so the results need to be interpreted with caution. Tramadol is widely and increasingly prescribed for chronic non-cancer pain and was considered to be a relatively safe alternative to other opioids when it was introduced, but this study suggests that we should tread carefully.

JAMA doi:10.1001/jama.2021.15255

Patchy evidence about smoking cessation treatment

In this flawed trial of 1251 smokers (>5 cigarettes a day), treatment with varenicline (a selective nicotine receptor partial agonist) alone or in combination with a nicotine patch for 12 or 24 weeks made no difference to the quit rate at 52 weeks (around 25% for all groups). All participants received cessation counselling before being randomised to one of the groups. The endpoint of abstinence from smoking at 52 weeks relied on self reported data confirmed by biochemical testing in most but not all participants. There was a high attrition rate (23% of the sample was lost to follow-up, and 9% withdrew) so this study is hardly a game changer. It does mean that bigger, better studies are needed to clarify the optimal type and duration of treatment to encourage smokers to quit forever.

JAMA doi:10.1001/jama.2021.15333

Mirtazapine doesn’t help agitation in dementia

People living with dementia commonly experience agitation, which is distressing for them and their carers. Non-drug strategies are preferable but not always effective, and the sedative antidepressant drug mirtazapine is widely used instead of antipsychotic drugs, which are associated with harm. This small but important multicentre UK trial of 204 participants found that agitation scores at 12 weeks (using the Cohen-Mansfield Agitation Inventory, CMAI) didn’t differ significantly in patients given mirtazapine (titrated up to 45 mg) compared with placebo and raised a warning that there were more deaths in the mirtazapine group compared with placebo (7 v 1). This alarm bell needs to be treated with caution: the study wasn’t powered to investigate a mortality difference, and it could have been due to chance. But in the absence of any evidence of a benefit, it certainly needs to be taken seriously.

The trial was also due to investigate whether carbamazepine is effective, but covid-related difficulties in recruitment led to that line of inquiry being dropped. The authors stress the value of an individualised programme of investigation and management that incorporates social and psychological measures as well as drug treatment if needed.

Lancet doi:10.1016/S0140-6736(21)01210-1

“Onco-exceptionalism”: cancer drugs get fast tracked

A cross-sectional US study of 37 348 patients who received one or more of 44 new oral targeted cancer drugs found that the proportion of patients receiving drugs without documented overall survival benefit increased from 13% in 2011 to 59% in 2018, and accounted for 52% of the $3.5bn estimated cumulative spending on new oral targeted cancer drugs by the end of 2018. Surrogate endpoints are increasingly used instead of clear measures of longer and better quality of life, and methodological sloppiness is rife. “Our findings suggest that cancer drugs with major shortcomings in their evidence base are adopted in the health system and account for substantial spending,” say the authors. This thought provoking study may reflect the regulatory and economic characteristics of the US healthcare system. Yet it also resonates with claims of “onco-exceptionalism,” which sees access to cancer drugs fast tracked despite a lack of strong evidence of benefit to patients or value for money.

JAMA Intern Med doi:10.1001/jamainternmed.2021.5983

Ann Robinson is an NHS GP and health writer and broadcaster

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A cell in such a system is generally represented by a square in the grid. The simplest state of such a cell is that it is either occupied (e.g. black) or unoccupied (e.g. white), on or off. An example of a simple rule is that a cell can be switched on if it is adjacent to a cell that it is already switched on. From such simple systems highly complex patterns can arise. Here’s an example.

Imagine a row of beds in a Nightingale-style ward, each represented by a cell in a one-dimensional array. A consultant visits one of his patients, represented by the black cell

Each time he comes to the ward thereafter he visits his other patients in an order that is determined by a simple rule: he will visit only those patients who have just one immediate neighbor who has already been visited. Anyone with no such neighbours or two such neighbours does not get visited. Here’s how the pattern of consultations builds up on successive visits:

Eventually all the patients get a visit, some lucky (or unlucky) ones more than once. In the following diagram each row represents a single visit to the ward, imagining the number of beds to be infinite:

We have seen this pattern before; it is the Sierpiński triangle, a fractal pattern generated by recurrently removing inverted equilateral triangles from within larger upright equilateral triangles, or by shading in the odd numbers in Pascal’s triangle. The simplest of rules has generated an exceptionally complex pattern. And it is impossible to predict from any rule and any starting position what patterns will emerge.

Cellular automata are playing increasing roles in medical science. In illustration of this, Figure 1 shows the numbers of publications containing the term “cellular automat*” in a PubMed search up to 2020 (n =1596). With isolated exceptions from 1966 and 1981, papers started appearing in 1985 and have been steadily increasing in number ever since, particularly in the last few years. Recent papers have described, for example, studies of the effect of lockdown, migration, and vaccination on the dynamics of covid-19 and modelling its spread in Brazil.

Figure 1. The numbers of publications year on year containing the term “cellular automat*”; blue: all publications; orange: titles (source PubMed)

Increasingly often our biological cells are being studied using computerized ones.

Jeffrey Aronson is a clinical pharmacologist, working in the Centre for Evidence Based Medicine in Oxford’s Nuffield Department of Primary Care Health Sciences. He is also president emeritus of the British Pharmacological Society.

Competing interests: none declared.

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Kerry was at the first Earth Summit in 1970 and has been an activist on climate change ever since. He was also at the meeting in Rio de Janeiro that gave birth to COPs and at the Paris COP that led to the Paris agreement. As he explained, the Paris agreement did not achieve the commitments the world needs to keep the global increase in temperature below 1.5C above—but it did “pull us back from the brink,” set a mechanism for reviewing progress, and sent a signal to businesses of the direction in which the world intended to travel. “For the first time in modern history, more investment went into renewable energy than went into fossil fuels.”

“Let’s be clear,” said Kerry, “the time for debating the causes of climate change is long over and the time for action is also long overdue…the stakes could not be higher.” The meeting was chaired by Lord Stern, the economist, who has led global thinking on the economics of climate change, and Kerry praised him for pointing out that “economists have grossly undervalued the lives of young people, your lives, your livelihoods, your ability to count on the barest of bare minimums and the right to live on a habitable planet.”

“The journey from Rio to Kyoto to Paris, and now Glasgow has taught me many things, folks, but above all that has taught me that success in the climate fight is defined not by words alone but by actions that they inspire. Glasgow has already produced more climate ambition than the world has ever seen, and in that regard, Glasgow has already achieved success…[but] we must do more to avoid the worst consequences of the climate crisis.” 

In public life, explained Kerry, you must make choices every day, and some are hard because costs and benefits are closely balanced. But addressing climate change “is not a hard choice…[it] is the only choice. In every way the cost of inaction is far greater than the cost of action.”

“Now we must significantly accelerate our efforts. That is a judgment, not of me or of President Biden, or of anybody in politics. It’s the judgment of the best science and mathematics. That’s what this is about. Not ideology, not politics, it’s about mathematics and physics. And according to the most recent report from the scientists at the United Nations Intergovernmental Panel on Climate Change … devastating consequences await us if global temperature rises above 1.5 degrees…And we are now already just at about 1.2.”

“We no longer,” Kerry continued, “need scientists to tell us what will happen because we’re seeing it happen now already. And we see it for ourselves here in the UK. In July, the Met Office issued its first ever extreme heat warning, as a deadly heat wave took over.” Germany had unprecedented floods that killed almost 200 people and swept away homes and bridges. A supercharged storm drowned people in their basements in the dead of night in New York City, months after more than 150 people froze to death in Texas. The rainforest of the Amazon is burning and being destroyed at the rate of 10 000 acres a day. Ten million people a year already die from air pollution around the world, another five million die because of the heat. “Without dramatic action, my friends, some of these things may make life unlivable.”

Kerry spelt out the difference between a temperature increase of 1.5C and 2C. “At 1.5 degrees, crops from corn, rice, and wheat are in peril. At 2.0 degrees many of those crops wither and die, especially in Africa and Southeast Asia, threatening starvation for tens of millions of people….Glaciers from the Alps to the Himalayas are melting, posing devastating consequences for the billions of people that rely on the waters of the great rivers that they feed from….Tens of millions of people are migrating due to climate change, which could destabilise entire regions…and economies could potentially collapse.”

“Let me be clear,” said Kerry, “No one, no one is exaggerating when they call this an existential threat….that is what makes this the decade of decision. And now we must make it, the decade of action. To prevent catastrophe, the scientists tell us, we must cut our global greenhouse gas emissions by at least 45% by 2030 in order to get to net zero by 2050. We head to Glasgow in that context, and I head to Glasgow an optimist.”

Can we, asked Kerry, close that gap that currently exists to stop us keeping temperature increase below 1.5C? He thinks we can.

“We’re seeing growing ambition from governments around the world,” commitments and investment from the private sector, and revolutionary technological developments. “Between Paris and Glasgow—despite a president who denied the science… we have seen real progress in the United States [and] …we’ve committed to reducing our emissions this decade by 50-52%….When I began in this role nine months ago…very few [countries]… were on track to reach the 1.5 degrees goal. Now nations representing nearly 65% of global GDP [more than half of the top 20 economies in the world] will arrive in Glasgow committed to the 1.5 degree limit…with real plans.”

Kerry warned, however, that damage is already here and the world has to adapt to climate change as well as mitigate it… “every dollar spent in adaptation can save up to $10 down the road.”

“There is,” continued Kerry, “another profound reason for optimism….more and more businesses around the world are joining this fight….a revolution is taking place in boardrooms…Corporate leadership in many places is now requiring investment in the environment, shareholders are demanding that their companies be part of the solution. And those investments are paying off.”

“Last year wind and solar accounted for 90% of new electricity capacity in the world….renewable energy is the cheapest energy available, and the costs are beginning to fall.” But investment needs to be in trillions not billions. The UN finance report says that we need to increase investment in the transition to renewable energy from 2.6 trillion to 4.7 trillion every year. “No government on earth can fill this gap alone….It can only happen with the full participation of the private sector.” A group of banking alliances will head to Glasgow and announce that they represent $85 trillion that they are prepared to invest heavily in the energy sector. 

This is, said Kerry. “a huge economic opportunity…[the] biggest transformation since the industrial revolution.”

But “we still face a gap….Everything I have said to this moment, underscores why I believe we can overcome that gap, but it’s going to take all of us. The world must work together to close this gap, but particular responsibility lies with the top 20 economies of the world, [which]… are responsible for 80% of all the emissions.”

Countries’ plans will in Glasgow “be held up to scrutiny, the scrutiny of the world….Coming out of Glasgow, we will be ready to experience the greatest springboard of all, the combined power of individuals around the world demanding accountability.”

“There’s a temptation on this issue, folks, to talk too much about GDP and emissions targets and not enough about human beings…We’re not just talking about statistics here. We’re talking about families, about people. We’re talking about parents and children and neighbours and friends.”

We should all be angry with the lack of progress, “but I also believe this momentum we are seeing is real and meaningful and will grow. I know that you and your voices and your actions are already making a difference, but also know that you can do more next week in Glasgow. We have the chance to win a victory for the next century for life on this planet. And then we’ll have to get up every single day and do it again…until the work of this decisive decade is decidedly done.”

You can watch the speech at https://www.lse.ac.uk/granthaminstitute/events/john-kerry/.

Richard Smith was the editor of The BMJ until 2004.

Competing interests: none declared.

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The covid-19 pandemic has shown that the world is unprepared for global health crises. There is an urgent need to establish robust and resilient health systems that can better respond to health challenges, including future epidemics that could surpass the intensity and gravity of covid-19. It is time for countries to invest in preparedness capacity and healthcare, drawing lessons learnt from the current crisis. 

Artificial Intelligence (AI) holds much promise in revolutionizing pandemic preparedness and response and healthcare more broadly. The pandemic has accelerated the application of AI in health, but applying the technology for real world impact has generated many hard questions. The World Health Organization (WHO) is committed to supporting countries to use these transformative technologies to advance pandemic preparedness and response capacity and strengthen their health systems. WHO’s Department of Digital Health and Innovation spearheads digital technologies for covid-19, and plays a pivotal role in supporting countries at various stages of digital development. 

In September, Dr Tedros was honoured to join Chancellor Angela Merkel to open the WHO Hub for Pandemic and Epidemic Intelligence in Berlin, a new centre designed to foster greater sharing of data and information between countries and to improve global surveillance for epidemics and pandemics by harnessing the power of artificial intelligence, quantum computing, and other cutting edge technologies.

While the pandemic has made the strategic importance of AI more evident, countries are at different stages on their journey towards the development of AI supported tools. Some countries have integrated AI into their pandemic response and have achieved some success; they are now looking to broaden its application and enhance its impact in a more sustainable way. Other countries have increased the availability of AI technologies, and are now looking to scale up its application in targeted fields. Many others are still new to AI, being unfamiliar with the potential of these technologies. However, the development trajectory of AI is non-linear and all countries can potentially benefit.    

Some of the challenges faced by countries implementing AI into their covid-19 response are explored in a recent collection of articles in The BMJ. These challenges include the legal, economic, ethical, equitable application of AI and the importance of culture and collaboration. For countries aiming to increase their AI capacity for health, there are two strategic steps for which WHO is actively providing guidance: fundamental readiness and operational readiness. 

Fundamental readiness is the preconditions needed to apply AI technologies. They include infrastructure and data supporting mechanisms. High quality universal internet access is the nervous system for AI innovation. It can facilitate telemedicine and break the geographical location limits of medical resources by supporting remote diagnosis and treatment. Intelligent connectivity, a new concept combining 5G, AI, and the internet of things, will enable new disruptive healthcare models. Investment in connectivity infrastructure for AI can help strengthen health systems and prepare countries for future pandemics. 

WHO is providing guidance and support for countries wanting to achieve fundamental readiness: for example, in 2020 our Department of Digital Health collaborated with Saudi Arabia during its G20 presidency, to identify gaps and actions for preparing digital health infrastructure. The Broadband Commission for Digital Development, the UN’s high level public-private partnership of which Dr Tedros is a commissioner, initiated and disseminated a repository of tangible actions around resilient connectivity. As AI algorithms are built on the accessibility of high quality data, new mechanisms that identify the most relevant data and make these data actionable will allow countries to develop AI for health. WHO has also established a covid-19 literature database, which now contains more than 310 600 vetted papers and preprints in one of the 150 languages around the world. 

Operational readiness is how AI technologies can be used in a responsible and sustainable way. It includes having a robust AI governance system and a workforce with sufficient expertise and skills. AI governance is the system of principles, laws, and regulations that ensure humanity can best navigate the transition to advanced AI systems. AI governance is uneven across the world with policy and regulatory measures varying substantially in different jurisdictions. 

WHO provides guidance and support to ensure global accountability for AI governance is in place and that it covers global regulatory and legal environments. For example, WHO recently published guidance on the ethics and governance of AI for health. The Department of Digital Health and Innovation has also collaborated with the UK during its G7 presidency to work on internationally recognised standards for AI. Many countries face a lack of expertise and the need to upgrade the skills of the workforce. Compared with high and upper middle income countries, which are better placed to gain the benefits of AI technologies, low and lower middle income countries face a widening gap in skills and expertise, which cannot be filled with official development assistance alone. Currently the WHO’s Department of Digital Health and Innovation is partnering with the International Telecommunication Union (ITU), the United States Agency for International Development (USAID), and the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) to run a Digital Health Leadership Training Programme, with focuses on improving the technology literacy of the health workforce and decision makers from low and lower income countries.

AI has the potential to revolutionise our visions and methods in the covid-19 response. WHO will continue to support countries to accelerate preparedness for these strategically important technologies for next generation pandemic response and healthcare management. 

Tedros Adhanom Ghebreyesus, director general, World Health Organization 

Soumya Swaminathan, the chief scientist, World Health Organization

Competing interests: none declared.

This article is part of our Artificial Intelligence and covid-19 collection.

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I’m doing this first leg because I thought Ride For Their Lives such a good idea when I first heard about it. I volunteered on the spot and then felt committed, even though doing just the first leg to Oxford (albeit 73 miles including my cycle to the start) is tokenism compared with the hugely greater demand of going all the way to Glasgow in eight days with long distances, multiple hills, and bad weather guaranteed. The Ride For Their Lives has been organised by staff at Great Ormond Street to carry to world leaders at COP26 four documents: the editorial published in over 220 health journals, the Healthy Prescription Letter signed by millions of health organisations and professionals, the latest report of the Lancet Countdown on Health and Climate Change, and a letter written and signed by many health professionals looking after children. A broader aim is to make clear how much health professionals care about climate change by putting themselves through great physical discomfort. The ride is sponsored by the Clean Air Fund and aims to highlight how seven million people, many of them children, are killed by dirty air each year. If the 30 or so people making the full trip had flown or driven to Glasgow, they would have added to air pollution: by cycling they will add almost nothing.

Accompanying the ride are pollution pods created by artist Michael Pinsky that allow people in different pods to experience the air of some of the world’s most polluted cities before experiencing clean air. The theory behind the work is that direct experience promotes change.

Granary Square is busy with people preparing to leave, others to say goodbye, a live web feed to WHO, cameramen, and confused onlookers. I encounter people I know and try to discover if there will be fast, medium, and slow groups. I want to be in the slow group, but I’m unnerved to discover there are four groups distributed at something close to random. I’m in “Silvery oaks.” Is it a tree at risk of extinction, or is the name, as my wife later suggests, a reference to my hair and age? The other groups are Hornbeam, Acacia, and Sequoia.

We are to be the first group off. Our leader assures me that nobody will be abandoned, and each group has a sweeper at the back. The entire set of around 30 cyclists assembles for a photograph, and then off we go, filmed as we leave. We are soon into Camden High Street heading north, but as we approach the Roundhouse one of our group gets a puncture. The young doctor from Wales impressively mends her tyre in about five minutes. She tells me later that she has weaned herself off bike shops. If I have a puncture, I’ll be finished.

As we come to Haverstock Hill I wonder if I’ll be able to make it all the way up. Nobody, I soon realise, would contemplate dismounting and walking, which I often do on hills. I do make it up and even to the very top past Hampstead Station. We then speed down the hill into the wastes of North London. It’s a complicated route designed to avoid busy roads. Some of the team did it on a training run a few weeks ago. Experienced cyclists tell me later that it’s crucial to train on hills, going up and down them repeatedly.

As we get to know each other, cycling side by side and chatting, a camaraderie develops. In addition to the young doctor our group includes a social worker, a paediatric anaesthetist from Glasgow, an IT specialist on a bright orange, electric bike, a French doctor, and some commanding figures who I assume to be mostly intensive care doctors from Great Ormond Street. (I don’t have the same chance to talk to them as they are usually at the front and I’m usually at the back.) All but one other are going all the way to Glasgow.

The French doctor tells me that there isn’t the same level of concern about climate change in France as there is in the UK. Few doctors are campaigning, and the whole issue is, as in the US, politicised, with the extreme right playing down the issue. The country’s reliance on nuclear power means that little has been invested in renewable energy. She has never been to Britain before and came yesterday on the Eurostar with her bike disassembled and packed into a container that’s simply a large suitcase.

London goes on and on, but eventually we reach Pinner, our first stop. Bearing in mind the mantra of “keep grazing,” I eat a tomato and mozzarella pastry I don’t really want. I have a pee, but peeing becomes ever less of a problem as we steadily dehydrate. One cyclist tells us in the evening that she’s peed only twice in the day when normally she would pee 14 times. This sort of information is regularly shared as thirst, hunger, aching muscles, sore bums, and disordered bodily functions steadily eclipse other worries.

We are now cycling through the Chilterns, which the French doctor admires, and I explain to her that this is where the British prime minister has his country residence. The Chilterns may be beautiful, but its hills are at the front of my mind, associated with some dread. Eventually we arrive at our biggest hill, which thankfully is long rather than steep. I have to stop, but I walk only about 50 yards and resume. I arrive at the top before a couple of others. We then hurtle down the hill with a wide view ahead of us into Princes Risborough.

Here we have a great bonus because “Phil’s auntie” has generously thrown open her garden and house to the cyclists. She has made a gigantic pot of tea and baked both plum and strawberry jam Victoria sponges, flapjacks, and other biscuits and cakes. We sit in the garden in the sun and feel grateful to “Phil’s auntie” and presumably uncle, who doesn’t get quite the same approbation. Afterwards I chat with the social worker about Humankind by Rutger Bregman and how people feel good doing good to others. That’s partly what this ride is about.

Soon after our stop we join a cycle path converted from an old railway track for seven miles. This is the best cycling, flat with no cars—but there are lots of dogs and children. Soon after the cycle path I see a sign saying “Oxford 13 miles.” This gives me a great boost, making me think that I’m neither going to bonk nor get left behind.

We then encounter a ford, but luckily there is a raised path beside the water. We don’t have to wade, as had been threatened. Two weeks ago the road was dry. “That’s climate change,” says somebody. Soon after the ford there is another hill where I have to briefly and shamefully walk, but now we are getting near our destination. Somebody says we have less than an hour to go. I’m disconcerted that I see no road signs to Oxford, but then I’m told that we are not going through Oxford but to the north of it.

As we cycle the last few miles I’m trying to chat but losing both my sense and breath at times. We arrive at the Kidlington Premier Inn, for which I’m grateful, although arriving to a brass band outside Oxford Cathedral would have been more uplifting. It’s 4.30, and the Silvery Oaks are some of the first to arrive. Some others are two hours behind us. 

The route to Glasgow is built round hospitals the gang will visit (Birmingham and Newcastle) and Premier Inns, as the inns are sponsors of Great Ormond Street. We are taken aback to discover that our rooms are not yet cleaned because of a shortage of staff. Later we discover that we can’t eat in the hotel for the same reason. I speak to the harassed manager, who has worked a 14 hour shift and is actually the manager of the Premier Inn in Swindon. This is the result of Brexit, I tell the French doctor.

As we are unable to eat in the restaurant, somebody has the initiative and skill to order 11 pizzas, which miraculously appear after about 30 minutes. While enjoying a drink and waiting for the pizzas I learn from a child and adolescent psychiatrist how thinking about death presents a problem to adolescents because our culture doesn’t want to talk about death. The inevitability of thinking about it but the difficulty with discussing it with others can lead adolescents into dark places, including excessive risk taking. 

We’ve been told not to eat our pizza in the bar or restaurant, but we decide to rebel. Sadly, our rebellion collapses in moments when the manager tells us, like naughty children, to eat in our rooms. As I guzzle pizza in a room with two beds and two bikes, I learn about the Young People’s Forum (YPF) at Great Ormond Street. The YPFs, as they are known, are scaringly articulate former patients and have a real say in the running of the hospital, even being involved in appointing the senior nurse. Some of the YPFs are cycling with us. I learn more as well about the great challenges, although also benefits, in the transition the patients must make to adult care.

In the morning I watch the teams depart. I clap them away, and some bit of me wishes I was joining them, but I am, I fear, just too old. The leg of nearly 100 miles from Harrogate to Newcastle, probably in the rain, would I fear break me.

But I’m hugely admiring of those who will go the whole way, and I hope they impress on world leaders their duty to children and young people—the patients of these health professionals—to preserve the world for them.

Richard Smith was the editor of The BMJ until 2004.

Competing interest: RS is the chair of the UK Health Alliance on Climate Change and has been involved in the editorial published in over 220 journals, the Healthy Prescription Letter, and this year’s Lancet Countdown on Health and Climate Change. He paid all his own expenses to join the Ride For Their Lives.

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One person in 55 is now infected with coronavirus in the UK. The odds are that every time you step onto a crowded bus or train carriage you meet someone who is infected with covid-19. Every time you are sitting in a restaurant maybe, or walking down a supermarket aisle, you will likely meet someone who is infected too. In early October one in 12 children were estimated to have had covid, and on 22 October there were 180 deaths in the UK. Every four hours, as many deaths are occurring in the UK as New Zealand has had for the whole pandemic. 

We are still in groundhog day, with a few new repeating scenes. The secretary of state for health and social care, Sajid Javid, has repeated what he said when first taking up the role: that “there could be 100 000 cases a day,” yet he doesn’t see this as a need to act, either then or now. English directors of public health have again broken from national guidance that they know is inadequate for their areas. NHS leaders and the BMA have called for urgent action “to protect the NHS.” 

Plan A of the government’s winter plan has only ever been the “do as little as possible” option. The government’s eggs are all in the vaccination basket: offer flu vaccination and a third dose of the covid vaccine as a booster (or not) then let everything else run loose and it’s the people’s fault if they get ill or infect others.  

Malta, Spain, Portugal, and the Netherlands have now overtaken the UK and Israel in the vaccination stakes. France, which had a high level of vaccine hesitancy, has climbed up to a comparable level of coverage to the UK, mainly because the French are using vaccine passports. Eastern and southern Europe, along with the Baltic countries, are now experiencing severe epidemics. They have had high levels of vaccine hesitancy and lower vaccine uptake. In some cases, health systems have been less well prepared to implement mass vaccination, or lost out in the chaotic EU central purchase earlier this year. 

Vaccination is still the best hope we have at reducing the virus to very low levels. Countries that have the highest rates of vaccination have seen an encouraging levelling of death rates throughout this year. Yet there is still no evidence of collective (“herd”) immunity even in countries where there is a very high level of vaccination or where there have been persistent waves of infection, as in Iran.  Reinfection occurs, especially with the delta variant, and vaccine efficacy declines over time. Vaccines still have a high level of efficacy against the delta variant, although less than with early variants. Yet where there are areas of low vaccine uptake within countries and with social mixing, these weaken a country’s ability to suppress the virus. In the UK there are areas where public confidence in the vaccine is being improved with interventions from local public health teams and community support, but more investment is needed in this localised action. Vaccines prevent serious illness as measured by hospital admission and death but do they prevent debilitating illness—persistent or long covid? Social mixing without masking enables the virus to find new unprotected, vulnerable people to infect and harm. Every time the virus finds a new host, new mutations occur, and new, potentially more vaccine resistant, variants will be formed in the UK’s “new variant factory.” So vaccination is not the sole answer. 

UK politicians have been too attracted to single technological fixes (testing, vaccination, the covid app, Nightingale hospitals), when what we need is the “Swiss cheese model”—using everything we’ve got at the same time to prevent viral spread. All of the European countries now enjoying high levels of double vaccine coverage with MRNA vaccines have still kept their social measures in place, in differing degrees throughout the summer. Masks have continued to be a requirement in public enclosed spaces in France, Portugal, and Spain. Germany requires FFP2 masks in enclosed public spaces and vaccine passports. Gatherings in public places have been strictly limited in Portugal and Spain until recently, despite high levels of vaccine coverage. France, Ireland, Montenegro, and Israel are other examples of countries requiring  vaccine passports.  

Living with covid does mean masking up in enclosed spaces, meeting outdoors when possible, working from home if we can, and if we can’t do without our night time entertainment it means vaccine passports. Vaccination, or evidence of a recent negative test, are a small price to pay for “normality.” Every vaccinated person has their vaccination card, and at least 10 million people now have the NHS app. It would seem a very small step to have to show it to gain access to somewhere you want to go—especially where employers should be protecting their staff. Millions of airline passengers have accepted the testing regimes of countries they wish to go to and the mask requirement on planes. The requirements in the UK plan B need to be put back into law for consistent control of the virus across the UK. None of them are major restrictions on our freedom.  

The government has now asked local authorities what they think about moving towards plan B. They are, once again, caught stalling on actions that experts called for in the summer. Government ministers trivialise what is at stake with the ill informed debate about masking in Parliament, with careless contributions from the leader of the House of Commons, the care minister, and now the chancellor.  They have chosen to pick a destructive and meaningless fight over the non-issue of face to face consultations in primary care, when they should have been praising the extraordinary effort of healthcare staff who’ve rolled out five rounds of covid and flu vaccinations. High levels of satisfaction with GP services continue, patients who need to get a face to face consultation get them, and the digital revolution envisaged by the NHS Long Term Plan has arrived. Calls to “protect the NHS” are not the bleatings of frightened and lazy health professionals, they are the voice of realism, distress, and burnout on the frontline. Protecting the NHS is indeed vital if the record 5.7 million patients on waiting lists are to be seen. 

Sajid Javid says that the British people will “learn to live with covid.” He has been heralded as the secretary of state for health who cares about the economy. With half a million cases of covid-19 in the UK in the past 14 days and perhaps one and a half million people in isolating households, he needs to recognise that the virus is the major threat to the economy. Morocco has banned travel from the UK, the global capital of covid. This may only damage tourism at first, but the restrictions from other trading nations that could follow risk damaging the economy more.  

Emergency restrictions have been reimposed in Romania, Lithuania, and Latvia. Latvia has imposed a four week lockdown from 21 October. The government must act this week, or be faced with much tougher decisions and less popular choices as the winter kicks in.

John Middleton, honorary professor of public health, Wolverhampton University, and president, Association of Schools of Public Health in the European Region. Twitter @doctorblooz

Competing interests: none declared.

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Bad news about our planet can be overwhelming and can make us feel helpless. But perhaps we’re missing a trick. Perhaps we each have a tiny bit of the answer at our fingertips. Far from having to become a climate expert, maybe offering what we already know is enough.

When a child walks into a child and adolescent mental health services (CAMHS) clinic we need to be ready to listen. Really listen. This means knowing ourselves well enough to realise if we’re distracted or upset. We let the reality of the situation be heard, and we may witness extreme distress. The very act of doing this can facilitate change. However troubling the story, we do not get up and walk out of the room.

Over time, among risk and uncertainty, we work alongside the child to help find a way through what they are facing; exploring what interconnecting issues are causing the distress, supporting their wisdom and perspective, calling on our own skills and others’ as required.

And if the child tells us about something that is causing them harm, we act to do everything we can to safeguard that child.

A recent UNICEF report estimates that one billion children are at “extremely high risk” due to the climate crisis. In a recent survey of 10,000 children and young people in 10 countries, 75% believe “the future is frightening” and 64% say their governments are not doing enough to avoid a climate catastrophe. And something that adds a completely preventable exacerbation of distress: nearly half say they’ve been ignored or dismissed when they try to talk about it. Despite being exposed to these multiple layers of harm, children and young people are showing courage and resilience as they lead on climate solutions.

As Paul Hoggett eloquently describes, “We are living in a time when a tragedy which is without precedent is unfolding in front of our eyes.” On some level we all know what the science is saying, but a lot of us are acting as if we are separate from this reality. To not do so is extremely painful.  

How can we each learn to bear the unbearable, so that we can hear—really hear—what our children are telling us? And to respond in a way that makes them want to tell us more? By amplifying their voices, supporting their actions, while stepping up ourselves to show that this is not their responsibility to fix. As mental health practitioners in the global North we carry influence that we can opt in to, or opt out of, using to this end.

We can acknowledge the power of our collective voice and focus on the systemic nature of the problem to “prescribe” the right treatment: drastic, just, climate action from the world’s most powerful.   

The very act of making space for the reality of the situation to be heard, and bearing witness to the distress, in ourselves, in people who seek our support or on a wider stage, will facilitate change.  

And there is a lot of distress right now.

If we could imagine the planet has feelings, I think we could imagine the pitch of her scream. 

We don’t need to imagine the pain of young people. They have had to march the streets and take governments to court to ask to be protected. 

What do we imagine is the next step for them if they continue to feel frightened, betrayed, and abandoned?

We can validate feelings of fear, grief, anger, panic, and sadness as understandable responses to the threat we are facing. We can help raise awareness that this is a sign of connection and compassion. This is not mental disorder. However, we can speak up to say that an enormous source of stress like the climate crisis will trigger or exacerbate serious mental illness in some.  

We can find training to better understand the issues and to develop additional skills and strengths we will need in this unfolding crisis. We can seek to understand our own feelings better and reach out for support if required. 

We can work across professional and generational boundaries to develop communities and resources of support. To find ways together to transform what individually can feel like overwhelming pain, distress, and grief about our predicament; from a draining, debilitating force into unquenchable fires in our bellies that connect us to each other and to what we love.  A feeling of connection to the millions of other people across the world who are developing beautiful, creative, climate solutions and the optimism this brings is one of the surprisingly life-affirming elements of facing the reality of this crisis. 

No one of us knows what lies ahead, nor what’s the “best thing” to do. However, once we have started to face the reality, standing shoulder to shoulder with other people, we will see things more clearly. 

We need to show in how we act and what we say that we’re in this together. That we care about the world, we care about our young people and future generations, and that, however bad it feels, we won’t walk out of the room.

Catriona Mellor is a child and adolescent psychiatrist with an interest in the mental health impacts of the eco-crisis on children and young people as well as what nature-based practices and insights can add to mental health care. Catriona is co-author on a 2021 quantitative global study into children and young people’s emotions and thoughts about climate change to be published in The Lancet Planetary Health. She is currently riding from London to Glasgow to raise awareness around air pollution and the climate health emergency on Ride for their Lives https://climateacceptancestudios.com/ridefortheirlives 

Competing interests: none declared.

References:

1. UNICEF. One billion children at ‘extremely high risk’ of the impacts of the climate crisis. UNICEF 2021. Available at: https://www.unicef.org/press-releases/one-billion-children-extremely-high-risk-impacts-climate-crisis-unicef  (accessed 15 Oct 2021). 
2. Hickman C. & Marks E., Pihkala P., Clayton S., Lewandowski E., Mayal E., Wray B., Mellor C., van Susteren L. (2021) A global survey of climate anxiety in children and young people and their beliefs about government responses to climate change. Pre-print available at Lancet Planetary Health https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3918955 
3. The #Youth4ClimateLive Series https://youth4climate.live/
4. Hoggett, Paul,(Ed.) (2019). Climate Psychology: On Indifference to Disaster.  Palgrave Macmillan.

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Already, 920 million children suffer from water scarcity, with numbers rising. By 2030 there may be more than 100,000 additional deaths in children under five due to malnutrition attributable to climate change, and an additional 7.5 million children with moderate to severe stunting of their growth. Children have suffered and died due to extreme weather events—floods, cyclones, heatwaves, and consequent wildfires. Climate change is now a leading cause of forced migration, disrupting children’s home and family lives, education, and healthcare. Hundreds of thousands of children under the age of five die as a result of ambient air pollution each year, and hundreds of thousands more due to household air pollution. 

Breathing faster, children inhale more of any pollutant per unit of body weight than adults. Their developing organs are particularly vulnerable in the womb and in early life. Recent estimates suggest exposure to air pollution during pregnancy may be responsible for nearly three million low birth weight and nearly six million premature births per year. Low birthweight and prematurity are key risk factors with potential irreversible impacts on health and wellbeing throughout life. This is significant physical harm on a global scale, with no safeguarding panels, or child death reviews. 

There are emotional impacts too. While having limited agency to change the trajectory of climate change themselves, children and young people will live to see more of its impact than those of us already a fair way through our lives. Anxiety is a rational response.

We know from surveys that many thousands of young people are feeling sad, anxious, angry, powerless, helpless, and guilty about climate change. “How dare you?” roared Greta Thunberg in 2019, “you have stolen my dreams and my childhood.”

Ella Kissi-Debrah isn’t roaring. She died in 2013 from severe asthma, exacerbated by her chronic exposure to high levels of air pollution in her neighbourhood by London’s South Circular road. We must roar on her behalf, and on behalf of all the other millions of children whose lives we are destroying. Call the global social services department and report ourselves for failing to change our ways, even when we knew we should. We are all perpetrators. At home, at work, weekdays, weekends, holidays, celebrations, with families, with friends—consuming, consuming, consuming. Depleting the global commons of natural resources our children will need, and increasing the burden of pollutants in our air, our water, and our land. We do this directly—sometimes burning fuel for the most frivolous of reasons, such as to avoid wearing another layer of clothing, or for our car to make the right vroom vroom noise. We do it indirectly too—we have learned to derive gratification from acquiring products whose manufacture, packaging, distribution, and disposal depletes and pollutes beyond our field of vision. Shortage of toys for Christmas? Fantastic—let’s do what genuinely makes us happy instead.

We have to change. We have to tackle climate change bottom up, top down, any which way we can. Child protection is everyone’s business, and climate protection is child protection. Climate risk assessments and mitigation protocols must be ubiquitous—every business, service, school, university, sports club, choir, band, event and so on should have these and be reviewed and audited against them. 

Health professionals, who fully understand the implications of destroying the ecological determinants of health, must lead from the front. People noticed when we all stopped smoking. They will notice when we take climate change seriously. 

The UN must be our global safeguarding committee. Each Conference of the Parties should include a child protection meeting, at which data and narratives on child suffering and deaths due to climate change are reviewed. At COP26 we must all be held to account.

There is no place of safety to which we can remove our children—no alternative world where climate change has been arrested and there is safe air, water, soil, food, and shelter for all. Everyone must play their part in rescuing this world to make it safe for children, and I for one will continue to roar until we do.

Lucy Reynolds is a community paediatrician living and working in Glasgow. Through the climate change and child health webinars run by the International Society for Social Paediatrics and Child Health she became involved in the Ride for Their Lives initiative and the RCPCH climate change working group. 

Competing interests: none declared. 

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Our planet is in need of palliative care. For years, climate scientists, effectively part of the planet’s “medical” team, have urged us to change the way we live in order to slow, or even reverse, our planet’s rapid spiral towards death. They have shown us the evidence, given us numbers, predicted time scales, and calculated the positive effects of treatment. We have ignored their advice and have continued to do the things that exacerbate the symptoms, that make the planet more unwell, and hasten it’s death. Some have hoped that somehow the “medics” have got it wrong. Others perhaps have taken the approach that if we don’t think or talk about it, then it won’t happen—a common approach to death throughout our society. Whatever our reasons, we have ignored the symptoms and professional advice for so long that the planet is dying. And this will not be a painless death, surrounded by loved ones and with medication to ease the suffering. This will be a slow and painful death, of flooding, of drought, of starvation, of rising temperatures, of forest fires, of increasing pollution, of increased disease, all bringing emotional suffering and pain on a huge global scale.  

It is time for the aggressive, life saving interventions. There is still the hope of cure, and we know what treatments will work. We need big changes, such as a rapid transition away from fossil fuels and investment in renewable energy. We all need to embrace the “treatment” in the knowledge that it can be life-saving. But alongside this we must not ignore the importance and impact of a palliative care approach. In the face of death, every day matters and every person matters. Not just the dying person, but those close to them. We teach our medical students that palliative care is everyone’s responsibility—every single person that comes into contact with the patient has a role to play. It may be just noticing that a water jug needs filling or sitting to listen, but you only have to hear a patient’s story to know the huge impact these apparently small acts of kindness, thoughtfulness, and compassion can have.

Our approach to the planet must be the same. In the face of death, every day matters. Every single person who lives on this planet, who breathes it’s increasingly toxic air, matters. Small acts of kindness, thoughtfulness, and compassion towards our beautiful planet will have an impact. We cannot all roar like Greta Thunberg, but we can all be the person who shows up every day, with the seemingly small acts that matter. We must follow the “medics” advice and stop doing the things that will exacerbate symptoms and contribute further to an early demise. We can all buy less, buy wisely, buy second hand. We must all learn to throw less away, repair, reuse things that others no longer need, and borrow things we don’t need often. We can reduce our use of “disposable” items by switching, for example, to cloth nappies and re-usable menstrual products. We need to change our diet to one that promotes healing, reducing our meat consumption (or even going veggie), and thinking about alternatives to cow’s milk. We need to make life style changes if we want to live. And contrary to what some may think, these will be life style changes that improve our quality of life as well as promoting our survival. 

We can no longer ignore the reality that is facing us. As the planet moves closer to inevitable death, we must hope that the aggressive treatments needed will come, and that these will not come too late. And we must embrace and commit to them, with the hope they bring. But none of us should sit idly by, waiting for the cure. We must all adopt the palliative approach, which will help to nurse our planet back to health. Every act matters. Every person counts. We must all stop feeding the disease and be part of the cure. 

Finella Craig is a consultant in paediatric palliative medicine in London. She travels everywhere on her bike, including to all her patient home visits, and is taking part in Ride for Their Lives London to Glasgow. 

Competing interests: none declared.

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In much the same way humanity and the medical profession have denied our role in human-caused global heating and the destruction of nature for several decades. Now that the vast majority of the world’s population recognises that the anthropogenic climate health emergency is happening, those still unconvinced or unable to act have pivoted from denial to delay. The correct prescription for climate action is well known and universally accepted by science—the immediate and just transition from fossil fuels to renewables, the reversal of destruction of our natural habitats and restoration of biodiversity in nature—we still focus on unproven and potentially unscalable technological fixes such as carbon capture. What is more, the success of victim blaming that has occurred through the promotion of personal carbon footprinting has successfully diverted attention away from the correct treatment which is to stop extracting and burning coal, oil, and gas. Just to make certain that no one puts their head above the parapet, the ubiquitous use of personal responsibility, has become deeply entrenched in discussions around the climate health emergency. It would be unusual to have a discussion about the climate without being asked if you still eat beef or drive a diesel car (open disclosure my answer is; occasionally and no). 

So, because the adults have left the room, the burden is placed on children and the younger generation to do the advocacy, to miss school, and to be trolled by the political leaders of the free world. 

But as healthcare professionals we can understand science. We have experienced the impact that the tobacco industry and “big pharma” can have with their vast financial and lobbying resources when they choose profit over the survival of their customers. We would (now) never consider taking bribes from big tobacco to pretend that cigarette smoke doesn’t cause lung cancer. But what have we said about the same particulates that come from our car exhausts and wood burning stoves?  Not nearly enough according to one coroner. 

It is time we stopped worrying about our inadequate skills and knowledge in the science of air quality and the climate health emergency. We don’t have time to become experts in climate science before speaking up about the health harms of the climate emergency. Whenever you are told that this is not in your job description and what you are saying is political, look at their motives for saying that. Are they in children’s best interests or the status quo?

The Climate Health Emergency is the greatest threat to child health in human history. We need to declare an emergency and then act as if there is an emergency, not sit back and wait for someone else to take charge. We need to use the skills we have at once.

If we work as a team and use all our individual strengths to achieve a common goal, we can give “the climate policy ratchet a healthy turn.”

We need team leaders who;

• Name and clearly articulate goals
• Set specific targets and the methods to achieve them
• Know their own and our team’s strengths and weaknesses.

And other roles are equally important:

• “Finishers” who see errors and fix them 
• “Coordinators” who see opportunities and allocate resources. 
• “Evaluators” who can stand back and prevent task fixation errors.

Teams can achieve major feats that individuals cannot.

But they need leadership, cooperation, coordination, and communication. Nothing will happen until we all speak the truth. Denial, and its best friend, delay, do not lead to good outcomes.

Mark Hayden is a paediatric intensivist working in London. He is taking part in the Ride for Their Lives from London to Glasgow ahead of COP26. He knows that this action will not reduce the concentration of carbon dioxide in the atmosphere, but hopes that this action will inspire other actions that will.

Competing interests: none declared. 

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There must be relevant training and resources within health and social care teams and departments to ensure that refugees’ needs are met and communication is safe. The Cultural Atlas (2021) provides one of the most comprehensive educational tools in understanding the culture and guiding healthcare practice on etiquette and communication. [2] The lack of available acceptable housing is going to be one of the largest issues facing Afghan refugees. There needs to be a close working relationship between community health services, homeless teams, and housing services. Such relationships are key as there is a duty of care to anyone in the local area to be housed even if that is in temporary accommodation. Health professionals may be the first responder in ensuring that local signposting to organisations and advocacy agencies are appropriately done.

Another issue that will need to be addressed in a timely fashion is the lack of money and finances. Contrary to myths surrounding refugees and asylum seekers who enter the country, they will not have money to live the lifestyle alleged by many. An asylum decision takes at least 28 days and at this point, there may be more destabilisation incurred for the families as temporary accommodation could cease. The usual expectations are to secure work or study but often children of this group barely get food, clothes, or toys, and families rely heavily on charitable donations.

Telephone language services have been a long-term resource available in the UK. The language needs of the Afghan community are likely to be Pashto and Dari. In areas of high dispersal, the use of key workers from the same background would be useful in ensuring others in teams learn about the cultural and religious disposition of this community. 

There may be a need to refer or to seek advice from safeguarding teams, where a child is in need or at risk. We cannot assume that the refugee status mitigates such referrals, and any impact on children is a usual way of life. Where there are needs not being met in the form of finances or a child is not able to get to school, for example, social services have a duty of care to ensure both risk and “needs” are assessed under the Children’s Act. 

Trauma interventions in terms of what is an effect of resettlement, or witnessing events in Afghanistan recently or in the past, will require robust resources. Combat stress, a veteran support line, reported an exceedingly high number of calls from veterans who served in Afghanistan and required mental health support, including suicidal ideation due to post traumatic stress disorder. [3] Prioritising support within the NHS workforce, which has already been impacted by covid-19 will be quite a challenge. Additionally, services need to be aware that culturally many Afghan refugees will feel more at ease talking in a group setting, as opposed to individual support sessions. Grief is often seen as a community experience rather than an individual one. The need to develop community kinships and innovative methods to engage with these groups would be advisable.

Suffering, grief, and ambiguous loss will feature in many presentations, which will not be restricted to trauma. Separation from loved ones and death related losses will be part of the psychological needs of the refugees. Therefore, there may be a need to increase the service provision in primary care psychological services for trauma and complex grief, at local and national levels.

Health services and the health and social care workforce will need to be skilled and culturally ready to welcome Afghan refugees to the UK. The double burden of covid-19 and poor healthcare has impacted the already burdened healthcare system in Afghanistan. [4] After ensuring the population is registered with a local GP, another complicating factor in the present circumstances is the impact of covid-19. Health professionals will have to quickly establish the refugees’ covid status, where they are in the vaccination programme, and introduce the refugees to covid-19 adjustments that the UK population has become used to. A big factor impacting the refugees will be their housing. If, as seems highly likely, they will be housed in overcrowded accommodation then this is the perfect breeding ground for covid-19 to spread. As stated, many will arrive in the UK in physically poor health, that in combination with substandard accommodation, and the threat of covid may prove fatal. Health professionals must be outspoken in trying to stop this scenario from unfolding.

The health and social care interface have the resources to support and ensure that a good value base is demonstrated through their practice. The disproportionate impact of covid-19 has already affected ethnic minorities across the globe. There is a small window of opportunity for services now to predict and assess their cultural responsiveness rather than rely solely on less appraised community-based initiatives.

Harjinder Kaur-Aujla, lecturer in mental health nursing, University of Birmingham.

Christopher Wagstaff, senior lecturer school of nursing, University of Birmingham.

Competing interests: none declared. 

References:

1.Equality Act (2010). [online] Available at: http://www.legislation.gov.uk/ukpga/2010/15/contents 

2. Cultural Atlas (2021) Cultural Atlas. Available at: https://culturalatlas.sbs.com.au/afghan-culture/afghan-culture-core-concepts#afghan- culture-core-concepts

3. Jakupcak, M., Cook, J., Imel, Z., Fontana, A., Rosenheck, R. and McFall, M. (2009), Posttraumatic stress disorder as a risk factor for suicidal ideation in Iraq and Afghanistan War veterans. J. Traum. Stress, 22: 303-306.

4. Lucero-Prisno, D.E., Essar, M.Y., Ahmadi, A. et al. (2020) Conflict and COVID-19: a double burden for Afghanistan’s healthcare system. Confl Health 14, 65. https://doi.org/10.1186/s13031- 020-00312-x

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The immediate and obvious harms to health and wellbeing are evident, as are the devastating reversals in hard-won progress on gender equality, health equity, and human rights. Current events in Afghanistan provide a stark illustration, and while no longer front page news, other current examples from Myanmar, Tigray, and Nigeria—to mention a few—point to how the erosion of rights and health for the world’s most vulnerable is increasingly becoming not only of concern, but the status quo. [3-8] These challenges are not confined to countries in a state of crisis, conflict, or instability. Globally we are witnessing regressive politics and democratic deficits that endanger the realisation of fundamental principles of equality and universal rights across a range of settings. It is increasingly evident that democracy, freedom, and the protection of human rights are not guaranteed even with “free and fair” elections. Those who suffer most will always be those who are most marginalised. 

Beyond the immediacy of the humanitarian response, we, collectively, as a global community of global health experts, have an obligation not only to continue to promote, but to strengthen the underlying values of social justice, equity, and human rights—not just in rhetoric, but also in our practice. This must be done, recognising the risk of harm to communities with whom we engage in these settings, particularly where political or religious ideologies drive inequity. [9,10] For example, the immediate response to the situation in Afghanistan has been to pull out all aid and humanitarian staff and actively encourage all qualified people with links to agencies to leave. The consequence is often mass emigration of those who can leave from local communities and international aid agencies. This may represent brain drain that leaves many sectors and essential services bereft of much needed technical expertise. 

The humanitarian sector has a range of guidance available for delivering health interventions during crises and conflict. [11] Humanitarian work is governed by core principles that may provide a useful approach and valuable lessons for global health practice. The principles include the overarching principle of humanity and neutrality, impartiality, independence, and collaboration/partnership. [12] Humanity highlights the need to address human suffering, protect life and health, and ensure respect and dignity. Neutrality prevents humanitarian actors from taking sides in hostilities relating to political, racial, religious, or ideological controversies. Impartiality ensures a focus on prioritising actions based on the urgency of need. Independence guides action that is autonomous from political, economic, or military influence. Local collaborations and partnerships are critical to ensuring the appropriateness and sustainability of solutions in the local context.

Despite some contestation in the interpretation of neutrality and impartiality, the protection and promotion of gender equality, or the rights of discriminated individuals, do not violate these principles. [13] Secondly, when the humanitarian response begins to evolve into longer term development and reconstruction, the principles of neutrality and impartiality can still be employed in negotiating new ways of working through questioning discrimination and inequality. The humanitarian principles are intertwined and inseparable, allowing for action to challenge and change inequities as core to the overarching principle of protecting humanity. Neutrality and impartiality in this context should be interpreted to mean that irrespective of the philosophy of any governing regime—rights to health and wellbeing, equality, and non-discrimination are universal. Humanitarian and aid personnel on the ground for the long term are progressively amassing experience and expertise, grounded in the realities of the local context. Their presence has proved critical to local populations, support, and building trust and credibility over the longer term, providing critical lessons on the core components for dialogue and progress. Approaches like these are important for achieving health goals because justice and gender equality can promote virtuous cycles of peace and stability. [14]

The global health community justifiably expresses shock and concern over unfolding crises from Afghanistan to Ukraine. Beyond condemnation, we recommend that the global health community consider the following:

1. Achieving global health goals necessitates addressing the underlying inequalities and injustices of peoples’ lives. This is not a short term activity. This requires trust, relationship-building, nuance, pragmatism, and understanding the politics of a situation. It also requires engagement with the systems and processes that shape the environment where people live. 
2. Context is king (queen!). The gut response to injustice is an important galvaniser for action, but we need to learn how to engage better with the social, cultural, economic, and political context through genuine collaboration with those who live and work in the various contexts.
3. Health equity and gender equality are powerful and underutilised tools towards peace and prosperity. [14] Concerted efforts to enhance our practice will yield multiple benefits.

The world is at a critical juncture; the threat of authoritarian regimes undermining human rights and equality are very real. The global health response in humanitarian or development settings can no longer claim to be doing its job by just providing health services and focusing on health outcomes alone. More than ever before, our global health practice needs to adhere fully to the principle of humanity by promoting health equity, gender equality, and human rights as a part of our core responsibility, recognising the nuanced understanding of the economic, social, cultural, and political contexts in which we work.  

Pascale Allotey, Director; United Nations University International Institute for Global Health.

Elhadj As Sy, Board Chair, Kofi Annan Foundation.

Zulfiqar A Bhutta, Co-Director, Centre for Global Child Health; Founding Director, Institute for Global Health and Development. Centre for Global Child Health, The Hospital for Sick Children, Canada; Institute for Global Health and Development, The Aga Khan University, South Central Asia, East Africa & United Kingdom.

Peter Friberg, professor and director, Sahlgrenska Academy at Gothenburg university, Gothenburg, Sweden, and Swedish Institute for Global Health Transformation, SIGHT, at the Royal Swedish Academy of Sciences, Stockholm, Sweden.

Sofia Gruskin, professor and director, Institute on Inequalities in Global Health, University of Southern California.

Geeta Rao Gupta, senior fellow, United Nations Foundation.

Sarah Hawkes, professor and director, Centre for Gender and Global Health, Institute for Global Health, UCL.

Competing interests: none declared.

References:

1 Institute for Economics and Peace. Global Peace Index 2021: Measuring Peace in a Complex World. 2021; published online June. https://reliefweb.int/sites/reliefweb.int/files/resources/GPI-2021-web.pdf (accessed Aug 30, 2021).

2 United Nations Office for the Coordination of Humanitarian Affairs (OCHA). Global Humanitarian Overview 2021. https://reliefweb.int/sites/reliefweb.int/files/resources/GHO2021_EN.pdf (accessed Aug 30, 2021).

3 Bhutta ZA, Akseer N, Dalil S, Akbari A, Saeedzai A. Afghanistan is at a crossroads again—preventing a descent into chaos. The BMJ 2021; published online Aug 19. https://blogs.bmj.com/bmj/2021/08/19/afghanistan-is-at-a-crossroads-again-preventing-a-descent-into-chaos/ (accessed Aug 30, 2021).

4 Cousins S. Afghan health at risk as foreign troops withdraw. The Lancet 2021; 398: 197–8.

5 Ahmad A, Rassa N, Orcutt M, Blanchet K, Haqmal M. Urgent health and humanitarian needs of the Afghan population under the Taliban. The Lancet 2021; 0. DOI:10.1016/S0140-6736(21)01963-2.

6 Lancet T. Myanmar’s democracy and health on life support. The Lancet 2021; 397: 1035.

7 Devi S. Tigray atrocities compounded by lack of health care. The Lancet 2021; 397: 1336.

8 Nesamoney SN, Darmstadt GL, Wise PH. Gendered effects of COVID-19 on young girls in regions of conflict. The Lancet 2021; 397: 1880–1.

9 Bowyer JJ, Broster SC, Halbert J, Oo SS, Rubin SP. The crisis of health care in Myanmar. The Lancet 2021; 397: 1182.

10 Aung MN, Shiu C, Chen W-T. Amid political and civil unrest in Myanmar, health services are inaccessible. The Lancet 2021; 397: 1446.

11 Gaffey MF, Waldman RJ, Blanchet K, et al. Delivering health and nutrition interventions for women and children in different conflict contexts: a framework for decision making on what, when, and how. The Lancet 2021; 397: 543–54.

12 Lie JHS. The humanitarian-development nexus: humanitarian principles, practice, and pragmatics. Journal of International Humanitarian Action 2020; 5: 18.

13 Foran S. Challenging patriarchy: gender equality and humanitarian principles. Humanitarian Law & Policy 2019; published online July 18. https://blogs.icrc.org/law-and-policy/2019/07/18/gender-equality-humanitarian-principles/ (accessed Aug 30, 2021).

14 Lancet SIGHT Commission. COVID-19: A Critical Moment to Embrace the Power of Health and Gender for Peace in Conflict-Affected Settings. Sight.nu. 2020; published online Dec 22. https://sight.nu/a-critical-moment/ (accessed Sept 3, 2021).

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As part of our work at the Policy Research Unit in Behavioural Science, (a member of a National Institute for Health Research programme to deliver policy related research), we summarised the evidence about what motivates GPs to take early retirement and reduces occupational participation. We considered the strategies that may prevent withdrawal from the work force and help support increased GP recruitment especially in rural areas. We were also interested in the evidence of effectiveness for behavioural insights, aka nudge-style interventions.

The findings of our report were clear. GP work is increasingly stressful, forcing many to opt for early retirement. The financial arrangements allow many to do so. Golden handshakes alone won’t fix rural recruitment. And behavioural insight interventions are highly unlikely to play any effective role in keeping GPs in the profession.

The determinants of stress are numerous: excessive workload, fear of litigation, the administrative and emotional burden of medical revalidation, job dissatisfaction, poor work-life balance, and pessimism about the future of the profession. Qualitative research revealed a number of factors which all contribute to feelings of stress and anxiety among GPs—the emotional toll of managing patients’ psychosocial needs; abusive or confrontational patients; a practice culture characterised by conflict or bullying; working in isolation without support; work role demands, specifically a fear of making mistakes; managing patient complaints, appraisal, revalidation, CQC inspections, and financial pressures faced by partners.

Recruitment and retention in rural areas is complex. Multi-dimensional approaches may be more successful than those relying on financial incentives alone, as lifestyle or personal values are highly influential. Locations of family, partner or spouse were factors that were prioritised over financial incentives to accept a rural post, as well as the ability to control working hours, professional development, a preference for larger practices, paid holiday, and assistance with partners employment and childcare.

Behavioural insights tend to focus on automatic, often unconscious decisions. Instead of supporting individuals to make decisions where they will weigh-up costs and benefits, behavioural insights focus on configuring options to account for human fast thinking. For example advocating a policy intervention that makes changes to the context in which individuals make decisions, rather than attempting to change how individuals feel about/react to contexts. To this extent there are limited opportunities to reduce early retirement, as the choice to retire is conscious and not passive. This was backed-up by the limited number of studies and the modest evidence of effect. However, organisational initiatives that might help physicians deal with stress, include coping strategies, and reflective groups, in addition to configuring work to enable part-time and/or flexible working.

Will the covid-19 pandemic be the catalyst to deliver the seismic change to GP working practices? The additional pressures created by the pandemic, as well as changes to pensions, and a lack of funding, are all counterproductive to long term retention. GP leaders are also unimpressed with their perceived lack of support for clinical practice. 

GPs want to work and they are vital. Their compassion and dedication has shone through in the response to covid-19. But achieving long-term retention, and reversing the decline in GPs’ morale, will take more than a nudge. It will require funding for more doctors, nurses, and support staff, pension reform, a reduction in workload demands, and additional mental health support. The will of GPs is clearly present, but the environmental conditions are missing. 

Vivi Antonopoulou, Louis Goffe, Aikaterini Grimani and Carly Meyer are all post-doctoral researchers for the NIHR Policy Research Unit in Behavioural Science.

Falko Sniehotta is professor of Health Psychology & Behavioural Medicine at the Universities of Newcastle and Twente and Director of the NIHR Policy Research Unit Behavioural Science

Michael P Kelly is a senior visiting fellow at the Department of Public Health and Primary Care, University of Cambridge

Ivo Vlaev is a professor of Behavioural Science at the University of Warwick

Competing interests: none declared. 

Funding statement: This project is funded by the National Institute for Health Research (NIHR) [Policy Research Programme (Policy Research Unit in Behavioural Science PR-PRU-1217-20501). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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A cell in such a system is generally represented by a square in the grid. The simplest state of such a cell is that it is either occupied (e.g. black) or unoccupied (e.g. white), on or off. An example of a simple rule is that a cell can be switched on if it is adjacent to a cell that it is already switched on. From such simple systems highly complex patterns can arise.

In his memoir, Adventures of a Mathematician (1991), Stanisław Ulam recalled how, in his student days in the late 1920s, his friend Stanisław Mazur proposed the first examples of infinite mathematical games and suggested the possibility of self-replicating automata. They didn’t record their abstract ideas, but some of their thoughts, he wrote, “were actually precursors of theories like that of [John] von Neumann on abstract automata.”

Actual realization of cellular automata started with von Neumann, a mathematician and computer scientist, in the late 1940s. His aim was to produce computer systems that were capable of replicating themselves, analogous to the way that biological cells do. He presented his ideas in a lecture given at the Hixon Symposium in Pasadena on 20 September 1948, later published under the title “The general and logical theory of automata”. He pointed out that “[the role of automata] in mathematics presents an interesting counterpart to certain functional aspects of organization in nature [although] natural organisms are, as a rule, much more complicated and subtle, and therefore much less well understood in detail, than are artificial automata.”

He discussed in detail the functioning of neurons and how neuronal activity could be modelled by a computerized automaton, nevertheless noting a major limitation, namely that the estimated number of neurons in the central nervous system was about 10¹⁰, all artificial automata at that time having no more than 10⁸ parts. “We have absolutely no past experience with systems of this degree of complexity.”

Von Neumann did not himself use the term “cellular automaton”. The earliest recorded instance of the phrase dates from 1965 in a paper in the Journal of Theoretical Biology by Walter R Stahl, “Algorithmically unsolvable problems for a cell automaton”, in which he discussed the biology of mammalian cells, particularly cancer cells, although we now recognize that his assertion that “the mammalian genome probably contains 100,000 to 1,000,000 genes encoded in billions of nucleotides” was a large overestimate. “It is impossible to prove,” he wrote, “ that the simplified axiomatic cell model is an adequate representation of any real cell, but it allows the introduction of certain concepts of automata theory into molecular biology in a new and provocative manner.”

In 1970 the mathematician John Conway described a cellular automaton that he called “The Game of Life”, a two dimensional system that starts with a few counters placed on an infinite grid and generates a large range of sequences of different shapes via three simple rules, relating to births, survivals, and deaths. This is probably still the best-known cellular automaton, and it has been shown to be a universal computer, comparable to a Turing machine. Martin Gardner described it in his Mathematical Games column in Scientific American in October 1970, as did Conway, with his colleagues Berlekamp and Guy, in the second volume of Winning Ways for Your Mathematical Plays (Academic Press, 1982), their classical work on combinatorial game theory, now in its second edition in four volumes.

Since then, with increased computing power, cellular automata have become important parts of artificial intelligence systems, with applications that include modelling the development of biological organisms, simulation of neuronal activity, studying homoeostatic mechanisms, cognition, cell proliferation, and tumour genetics, and many others. 

I have included an example of a cellular automaton in this week’s Interesting integer section below: the Ulam–Warburton cellular automaton, first published in 1962 and named after Stanisław Ulam and a Scottish engineer, Mike Warburton. Next week I shall demonstrate some other simple cellular automata.

Jeffrey Aronson is a clinical pharmacologist, working in the Centre for Evidence Based Medicine in Oxford’s Nuffield Department of Primary Care Health Sciences. He is also president emeritus of the British Pharmacological Society.

Competing interests: none declared.

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This small but interesting Australian study found that treatment with fractional carbon dioxide laser did not reduce the severity of self rated postmenopausal vulvovaginal symptoms such as vaginal dryness or improve quality of life or vaginal histology compared with sham treatment after 12 months (change in score from baseline -17.2 v -26.6 on a visual analogue scale and -3.1 v -1.6 on the Vulvovaginal Symptom Questionnaire score). These results contrasted markedly with previous observational studies that suggested a 75-100% reduction in symptoms for women treated with vaginal laser. The device was widely adopted across the world on fairly weak evidence, prompting a warning by the US Food and Drug Administration in 2018 that robust evidence of efficacy and safety were still lacking. This study was small and imperfect (for example, minor vaginal trauma caused by the probe could have prompted healing which helped symptoms even when sham treatment was used). Bigger and better studies are much needed, as it’s a common and distressing problem with few effective options.

JAMA doi:10.1001/jama.2021.14892

Covid immunity and infection risk for household members

What is the impact of individuals who are immune to covid-19 on the risk of infection among non-immune family members? This large Swedish cohort study (nearly 1.8 million people from 0.8 million households) found that the risk of non-immune family members contracting covid-19 reduced as the number of immune family members increased (by 45-61% with one immune family member, 75-86% with two, and 91-94% with three). There may have been some other variables to account for the results, but it’s reassuring for pandemic control that having a family member with immunity (from a previous infection or from full vaccination) has a protective impact on non-immune family members. The authors rightly caution that single doses of vaccine may be less effective against emerging highly transmissible variants.

JAMA Intern Med doi:10.1001/jamainternmed.2021.5814

Statins: good for the heart, bad for diabetes?

Are statins good for diabetic people? There’s a dichotomy: US guidelines recommend statins for all diabetics aged 40-75 years with an LDL cholesterol level >70 mg/dL (1.8 mmol/L) to reduce cardiovascular risk, but statins themselves have been associated with insulin resistance and higher blood glucose levels, which increase cardiovascular risk. This 12 year US retrospective cohort study of 83 022 matched pairs of statin users and non-users found that, among those diagnosed with diabetes during the study period, initiation of statins was associated with a worsening of diabetes (for example, greater likelihood of needing to start taking insulin or significant hyperglycaemia and complications). The odds of diabetes progression among statin users versus non-users were 1.83, 1.55, and 1.45 for high, moderate, and low intensity cholesterol lowering, respectively. Tight lipid control with statins needs to be weighed against the risk of diabetes progression; one size fits all is too crude.

JAMA Intern Med doi:10.1001/jamainternmed.2021.5714

Empagliflozin for heart failure

Sodium-glucose cotransporter 2 inhibitors such as empagliflozin are known to reduce the risk of hospitalisation in patients with heart failure and a reduced ejection fraction, but do they have a similar effect if ejection fraction is preserved? This randomised trial conducted over 26 months found that, in addition to usual care, treatment with empagliflozin reduced hospitalisation for heart failure compared with placebo (8.6% v 11.8%) but had little impact on cardiovascular deaths (7.3% v 8.2%). Thirty one patients needed to be treated with empagliflozin to prevent one primary outcome event (hospitalisation or death). There was a high drop-out rate (23%) across both groups, which may have skewed results to an extent.

N Engl J Med doi:10.1056/NEJMoa2107038

Most children with chest infections don’t benefit from antibiotics

A well conducted randomised controlled trial across 56 general practices in England found that children aged 6 months to 12 years with acute uncomplicated lower respiratory tract infection (LRTI) fared no better after a seven day course of amoxicillin than with placebo. There was no difference in primary outcome (duration of symptoms rated moderately bad or worse (measured with a validated diary) for up to 28 days). This held true irrespective of whether the clinician was using chest signs, fever, assessment of how unwell the child was, or the presence of sputum, chest rattle, or breathlessness as their reason to prescribe antibiotics. The study’s authors are clear that “unless pneumonia is suspected, clinicians should provide safety-netting advice but not prescribe antibiotics for most children presenting with chest infections.” If anything, antibiotics are even less likely to be effective in real life practice, as the children recruited to the trial were more unwell than is usual in a low risk population.

Lancet doi:10.1016/S0140-6736(21)01431-8

Ann Robinson is an NHS GP and health writer and broadcaster

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When I became an assistant editor at The BMJ in 1979 and began to process scientific papers submitted to the journal it was extremely unusual to see, let alone publish, a paper from a low income country. I remember being surprised by high quality papers coming from Bangladesh, a country that Henry Kissinger called a “basket case.” Those papers came from the International Centre for Diarrhoeal Disease Research, Bangladesh, which I learnt later was a creature of the Cold War and might cruelly be called a “branch office of Johns Hopkins.”

Years later, in 2013, I became the chair of the board of what was by then called icddr,b. The centre has now published major vaccine trials led by Bangladeshi scientists in the New England Journal of Medicine,¹ and I was privileged to be on the steering committee of a major trial, also published in the New England Journal of Medicine, of a system for managing hypertension in rural Pakistan, Bangladesh, and Sri Lanka led by scientists from those countries.²  Last year I was delighted to see a major trial of the polypill for the prevention of cardiovascular disease led from India and also published in the New England Journal of Medicine.³

High quality research relevant to the needs of low and middle income countries is much commoner now than it was 40 years ago, and China has become a scientific leader. But, as the editors of this book describe in the introduction, there is still not nearly as much good research as there should be from the part of the world that carries most of the disease burden. Even worse, the medicine practised in some of these countries is disconnected from research and teaching, and driven more by profit than what is best for patients and the population. I have Indian friends who are terrified of seeing a cardiologist for fear that they will be given treatments they don’t need.

I agree with the editors’ diagnosis that “the main reasons for our having sunk into this deep morass is not because we are poor but because we have not intelligently examined, evaluated and investigated how we could use our own resources more effectively. We have tended to blindly follow what is being done in richer countries instead of trying to provide healthcare to our population which is accessible, affordable and, most importantly, appropriate even if this means deploying and working with informal healthcare providers.”

Other people’s research can be valuable, but it can never be as valuable as your own—addressing the problems that matter to your people with relevant methods and the tools you have. And we know that the very act of researching brings improvement, and (as I know to my cost) you can never learn about research from reading about it: you need to do it.

I’ve never quite understood why people in low and middle income countries would want to replicate the health systems of high income countries. Not only are those systems not relevant to the needs and circumstances of the low and middle income countries, but the systems in high income countries are increasingly unaffordable and unsustainable and not meeting the needs of their own populations. 

Health systems in high income countries were developed decades ago and were designed to respond to the infectious disease and trauma that were then the main causes of suffering and death. Those problems could be cured, but now non-communicable disease is the main cause of suffering and death. Such disease cannot be cured and needs a different approach. 

Non-communicable disease is now also the main cause of suffering and death in low and middle income countries (apart from some sub-Saharan countries, but even there it will soon be the main cause). The epidemiological transition happened very fast in low and middle income countries: in Bangladesh non-communicable disease caused about 10% of deaths in 1986 but nearer 80% by 2006.⁴ I spent years working with 11 centres in low and middle income countries that were doing research, building capacity, and advising on policy in relation to non-communicable disease. We envisioned what a better system in low and middle income countries might look like—with an emphasis on public health, the social determinants of health, prevention, primary care, patient empowerment, and widespread use of evidence based guidelines.⁵ (Such guidelines were developed by academics in South Africa as part of a package that allows good primary care where doctors are few or unavailable.⁶)

We should have said more about the use of technology. Most people in low and middle income countries, even some of the poorest, now have mobile phones, which has meant that people can communicate without having to connect every house by wires, as happened with terrestrial phone systems in high income countries. Low and middle income countries can in this way “leapfrog” over a stage that was needed in high income countries, and the same can be done for health—not least by using mobile phones to provide access to care. Similarly, health systems in low and middle income countries might create health record systems where patients, not healthcare providers, own and control the records. Health systems in high income countries are just beginning to recognise the importance and inevitability of giving patients ownership and control of their records. (I have a conflict of interest here as I’m the chair of Patients Know Best, a company that gives patients in Britain and some other countries control of their records and data.)

Health systems in high income countries are actually sickness systems, and low and middle income countries would be wise to concentrate more on health. Only a small part of health comes from the health system, but politicians, citizens, and even many health professionals seem unaware of the fact. Consequently, health and healthcare are treated as if they are synonymous. Those countries that currently have poorly developed health systems have the opportunity to build systems that pay more attention to health than healthcare, as indeed was the case in many traditional and ancient health systems. Physicians to Chinese emperors were paid only if the emperor was well. 

Such developments in health and health systems can be achieved only through research conducted in low and middle income countries by researchers from those countries. And, I suggest, we need a new way of doing science, and researchers in low and middle income countries should take the lead. I have recently been part of a discussion on the future of the UK Academy of Medical Sciences, and people are advocating a new way of doing science that will be much more transdisciplinary and global with more involvement of citizens. A broader range of methods will be needed, together with a greater willingness to bring together different kinds of studies and data to reach conclusions. Without curiosity-driven research being neglected, there might be more emphasis on research that brings social benefit. Implementation of research findings will become as important as discovery, and the hierarchy of science that ranks genetics above social science will disappear.

Secondary aspects of the new science might be universal data sharing, greater transparency throughout the research process, immediate open access to all research, and the final abandoning of publications and the place of publication as the main way to measure academic success. In addition, scientific integrity (and its dark twin, misconduct) will be taken much more seriously, as will the commitment to explaining science and how it works to the public. 

As part of the debate over the future of the academy there has been discussion on priorities, and two of the priorities that are widely advocated—climate change and inequalities—are even more relevant to low and middle income countries than to high income ones. It’s a huge global injustice that most of the greenhouse gases that are causing climate change have been produced in high income countries, but the resulting harm will be experienced mostly in low and middle income countries. A third of Bangladesh, already a densely crowded country, is set to disappear under water, and temperature increase and drought will reduce crop yields in many low and middle income countries, forcing people to migrate. Health academics must pay attention to climate change, which will mean forming new, unfamiliar research partnerships with climate, agricultural, social, and political scientists.

Academics must also recognise the huge role that inequalities in wealth, income, education, and opportunity play in health. The covid-19 pandemic has brutally illustrated the importance of inequality, in both high and low and middle income countries. Most low and middle income countries have even greater inequality within the countries than do high income countries. Health researchers in some high income countries, including Britain, have done a good job of measuring and describing the harm to health from inequalities but have done less well in reducing the harm. Researchers in low and middle income countries have an opportunity to do better.

The world faces considerable problems, and what is clear is that research and teaching will be essential in tackling those problems. It’s also clear that the research and teaching must be undertaken by researchers and teachers within countries, producing responses and using methods that are right for their countries. This book will be a great aid to researchers and teachers. The result should be better health and sustainable health systems. The opportunities are greater than the problems. 

Richard Smith was the editor of The BMJ until 2004.

Conflict of Interest: RS is the unpaid chair of Patients Know Best, but he has equity in the company. He is the unpaid chair of the UK Health Alliance on Climate Change, but he has shares in the UnitedHealth Group. He was not paid for writing the foreword to the book and will not benefit from whatever sales there might be.

References

1 Qadri F, Wierzba TF, Ali N, et al. Efficacy of a single-dose, inactivated oral cholera vaccine in Bangladesh. N Engl J Med 2016; 374:1723-1732. DOI: 10.1056/NEJMoa1510330

2 Jafar TH, Gandhi M, Asita de Silva H, et al. A community-based intervention for managing hypertension in rural South Asia. N Engl J Med 2020; 382:717-726. DOI: 10.1056/NEJMoa1911965

3 Yusuf S, Joseph P, Dans A, et al. Polypill with or without aspirin in persons without cardiovascular disease. N Engl J Med 2021; 384:216-228. DOI: 10.1056/NEJMoa2028220

4 Ahsan Karar Z, Alam N, Streatfield P. Epidemiological transition in rural Bangladesh, 1986-2006. Glob Health Action 2009 Jun 19;2. doi: 10.3402/gha.v2i0.1904. PMID: 20027273; PMCID: PMC2779938.

5 Checkley W, Ghannem H, Irazola V, et al. Management of NCD in low- and middle-income countries. Glob Heart 2014;9:431-443. doi:10.1016/j.gheart.2014.11.003

6 Fairall L, Cornick R, Bateman E. Empowering frontline providers to deliver universal primary healthcare using the Practical Approach to Care Kit. BMJ Global Health 2020;3:ek4451rep.

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Unfortunately, the global campaign to vaccinate the world is faltering. The COVID-19 Vaccines Global Access Facility (COVAX) was launched last year with the aim of distributing two billion vaccine doses to low- and lower-middle income countries by the end of 2021. However, because around three dozen rich countries hoarded the global vaccine supply, COVAX has only been able to distribute 365 million doses at the time of writing. At the current rate of global vaccination, poorer nations will have to wait until 2023 to see widespread vaccination. 

The good news is, it’s not too late to take a game-theory approach to “change the game” and steer the global pandemic in a safer direction—and in so doing, to lay a foundation of preparedness for the next pathogen with pandemic potential that emerges in the future.

From a game-theory point of view, the fundamental problem with COVAX and other aid-centric global health efforts is that everyone prefers for others to pay for the global public goods that result from these efforts—what’s known in economics as “the free-rider problem.” To overcome the free-rider problem, we need to find a way to reward the wealthy countries that help the rest of the world escape the pandemic, and to do so in a way that is so compelling that these wealthy countries view providing such help as essential to their own national interest. 

The military alliance NATO provides a model for how that could work. Countries that join NATO commit to provide troops, ships, aircraft, and funds to support NATO operations. In doing so, NATO members make the world a safer place, but there is no free-rider problem associated with this global public good because member countries know that being part of NATO is essential to their own national security. 

We envision a pandemic vaccine alliance (let’s call it “PANVAX”) that works similarly to NATO, one in which member nations work together to make the world a safer place, but also prepare and commit to one another’s mutual defense. But unlike NATO, this will be an alliance open to every country in the world willing to support it, and one in which low- and middle-income countries will play an essential, and eventually leading, role. 

We should state up front that our NATO analogy does not mean we support the “securitization” of global health—in fact, we believe there are dangers in conflating public health with military and intelligence concerns. But we feel there are valuable lessons to be learned from NATO as an alliance model that could be applied to pandemics, especially in terms of detection, containment, and response.

We initially proposed PANVAX on 7 May 2021 in a public meeting of the National Academies of Science, Engineering, and Medicine on global coordination and financing for influenza vaccine preparedness. PANVAX would aim to ensure the world’s biological security, by enabling the rapid development, testing, production, and distribution of enough vaccines for all people in any PANVAX member country against any novel pandemic pathogen. 

As we envision it, PANVAX will have three key functions. The first two (rapid pathogen detection and rapid vaccine development and trials) create global public goods. The third (rapid and robust vaccine production) exclusively benefits PANVAX members and hence will incentivize wealthy countries to support PANVAX, even if they only care about themselves.

The first function is rapid pathogen detection, to identify and characterise any new pandemic pathogen before it has infected a large number of people.

The notion of biological security, that people can be kept safe from unknown future biological threats, would have been unthinkable even a decade ago. Yet, with recent advances in genetic pathogen surveillance and vaccine technology, such security is now within reach. 

Consider the challenge of discovering when a pandemic pathogen has emerged. Disease-causing pathogens are discovered all the time, but most have no pandemic potential. Moreover, for pathogens like SARS-CoV-2 that only sometimes cause severe infection, a clear pattern of severe disease may not be evident until the pathogen is so widespread that containment is no longer possible. 

Fortunately, new genomic surveillance methods have been developed in recent years, including bioaerosol sampling on animal farms and detecting a pathogen’s genetic material in sewage. PANVAX can enable such rapid pathogen detection by funding and establishing a stronger global surveillance network and empowering low- and middle-income countries to develop and sustain their own surveillance capabilities. Funding and supporting such a global pathogen surveillance network, building on existing initiatives such as the newly launched WHO Hub for Pandemic and Epidemic Intelligence, should be a top priority right now for the United States and other high-income countries, as this will allow us to identify and prepare for new coronavirus variants as soon as possible, no matter where they emerge.

In our NATO analogy, rapid pathogen detection through genomic surveillance is akin to radar detection of a nuclear missile immediately after launch, and PANVAX’s global surveillance network is akin to NATO’s network of radar installations.

The second function that PANVAX would perform is rapid vaccine development and trials, to develop and test vaccines against the pandemic pathogen while it remains mostly regionally contained. 

Knowing the genetic code (the sequence) of a pandemic pathogen allows vaccines to be developed and produced extremely rapidly. For instance, just 66 days after the draft genome sequence for SARS-CoV-2 was published online on 10 January 2020, the first phase 1 clinical trial of a vaccine candidate began. Covid-19 vaccines were developed in under a year, the fastest vaccine development in history (the previous record was four years, for mumps vaccine). 

One reason why covid-19 vaccines were developed so quickly is that SARS-CoV-2 spread rapidly into high-income nations like the US and UK that have strong clinical trial sites. A future epidemic or pandemic may remain in just one or a few regions. In this situation, the vaccine development and testing process will require urgent trials in the “ground-zero countries” in which the pathogen has emerged (just as the Ebola vaccine, Ervebo, was trialed in Guinea during the 2014-2016 Ebola epidemic in west Africa). 

PANVAX could enable such rapid vaccine trials in several ways: by establishing ethical and scientifically-valid protocols for determining a vaccine candidate’s safety and effectiveness in the midst of an incipient outbreak; by partnering ahead of time with national health authorities to be ready to rapidly deploy those testing protocols; and by ensuring that ground-zero countries receive prioritized access to the first vaccine doses produced—and hence have a strong incentive to cooperate with PANVAX in the early days of the crisis. 

In our NATO analogy, rapid vaccine development and testing is akin to destroying a nuclear missile while it remains in space, whereas the traditional approach is like waiting until the missile lands and explodes before doing anything to mitigate its impact.

Thirdly, PANVAX would facilitate robust and reliable vaccine production on a massive scale.

The race to develop and produce covid vaccines has been a scientific and technological marvel, but also a sad spectacle of selfishness and fear. In the moment of greatest need, many rich countries took stock of what they had for themselves and then refused to share. Because of such “vaccine nationalism,” existing production supply chains that relied on international cooperation suddenly became unstable and unreliable, disrupting and slowing global vaccine production. 

PANVAX can avoid such production-coordination failures by establishing, ahead of time, a supply chain contained entirely within the PANVAX Alliance that is capable of rapidly, reliably, and robustly producing enough vaccine doses for everyone in the alliance. 

The electricity reliability systems that have been introduced in the United States over the past two decades provide a useful model for how PANVAX could establish and rapidly mobilize its vaccine supply chain. In the early 2000s, a series of unsettling price spikes and regional brownouts revealed the unreliability of our electricity supply. Most of the Independent System Operators (ISOs) who run America’s power grids (all except Texas) responded by introducing so-called “forward-capacity auctions” to ensure reliability. In a forward-capacity auction, the ISO specifies how much overall capacity will be needed in the future to reliably meet peak demand and takes bids from qualifying suppliers. 

Winners of the auction receive a subsidy in exchange for committing to be available in the future to provide electricity whenever the ISO calls for it, even on a moment’s notice. By design, “the future” in which suppliers commit to be ready to provide electricity is sufficiently far away (e.g. three years in New England) that someone can bid in the auction and then, after winning, have time to build a new facility from scratch to meet its reliability obligations. 

In much the same way, PANVAX could specify all the capabilities (detection, development, testing, and production) that it needs in order to be able to rapidly produce enough vaccine doses for everyone in the alliance, then identify and fund those best positioned to meet those needs. This includes funding, importantly, those in low-income countries that have traditionally lacked these capabilities, but that need to play a central role for PANVAX to be successful—initially in rapid pathogen detection and vaccine testing, but growing over time also into key centers for vaccine production and infectious-disease science. 

PANVAX as we envision it is a voluntary, opt-in mechanism. We believe that the incentives to join are so strong that most nations would participate but, as with any new voluntary programme, there is a risk that countries may take a “wait and see” approach, only joining the alliance once it is well-established. This is a potential weakness of our proposal, relative to a compulsory mechanism in which all nations are required to fund a pandemic vaccine facility according to their means. But it also means that there is a leadership opportunity here for high-income countries committed to the PANVAX vision. Once these “first-mover countries” develop the capabilities needed to rapidly mass-produce vaccines at a global scale, the rest of the world will naturally follow. Working together all across the world, we can then protect ourselves from the next pathogen with pandemic potential—whether it’s an even-more-dangerous SARS-CoV-2 variant or something entirely new.

David McAdams Professor of Business Administration and Economics, Fuqua School of Business, Duke University, Durham, NC, USA

Gavin Yamey Professor of Global Health and Public Policy, Center for Policy Impact in Global Health, Duke Global Health Institute, Duke University, Durham, NC, USA

Competing interests:

DM declares that he has no competing interests.GY declares that he is a signatory to the People’s Vaccine Campaign and is a funding member of Amnesty International, one of the members of the People’s Vaccine Alliance. He was a member of the COVID-19 Vaccine Development Taskforce, hosted by the World Bank, and participated as an academic unpaid adviser in the consultation process that led to the launch of COVAX, a global Covid-19 vaccine sharing mechanism. He has received grant funding from the WHO, Gavi, the Vaccine Alliance, and the Bill & Melinda Gates Foundation. 

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The “Zero Hour” Alliance campaign’s three COP outcomes are key elements of a Climate and Ecological Emergency (CEE) Bill currently scheduled for its second reading in Parliament on 29 October 2021. The bill, which has been endorsed by a number health organisations, including the UK Health Alliance on Climate Change, provides a framework of overarching policy imperatives that address the UK’s responsibility to reduce emissions and global ecological footprint urgently and fairly.

It represents the only legislation currently before the UK Parliament that presents an approach for tackling our current climate and nature emergency. It does this by setting climate and nature targets that require the government to reduce greenhouse gas emissions at a rate consistent with limiting temperature increase to 1.5C. It also requires a commitment to halt and reverse the UK’s global contribution to the loss of nature through the creation of a climate and nature strategy that incorporates the UK’s emissions based on the complete cycle of its consumption including aviation, shipping, land-based transport, manufacture and disposal of goods. This is important, as it recognises the need to focus much wider than our domestic consumption and take responsibility for the UK’s entire greenhouse gas carbon footprint, much of which takes place beyond UK borders.

The bill requires this strategy to be developed and delivered fairly with an approach that involves a citizens’ assembly representative of the whole population.

The bill aligns closely with the urgent actions recently highlighted by the global health community in an editorial published in 200+ international journals which called for emergency action to cut emissions, restore nature, protect health, and support developing countries. The key messages outlined in the editorial have been further strengthened by a letter coordinated by the health community and signed by individuals and organisations representing about 45 million healthcare professionals globally. This letter, which is targeted at Heads of State and climate negotiators attending COP26 in Glasgow next week, calls for a global commitment and approach to limiting global warming fairly and equitably with higher income countries making larger cuts to emissions and transferring funds to support lower income nations to achieve their targets.

Laurie Laybourn-Langton, a former director of the UK Health Alliance on Climate Change, is one of the lead editors on the editorial and led the coordinated action to publish across multiple international journals. “As we approach COP26 in Glasgow next month, it has been encouraging to hear many governments talking about targets and actions to reduce emissions to protect nature. However, promises are not enough—we have learned from past experience that targets can be easy to set but difficult to achieve. We need to see ambitious but credible strategies and plans that will deliver the targets we set to achieve,” he said.

“In the editorial we say that global targets are not enough. Insufficient action to date means that temperature increases are currently on a trajectory to be well in excess of 2C, which would be catastrophic for health and environmental stability. Critically, the destruction of nature does not have parity of esteem with the climate element of the crisis, and every single global target to restore biodiversity loss by 2020 was missed.”

The CEE Bill addresses some of the concerns raised in the editorial by establishing a climate and nature strategy that will deliver the targets to reduce greenhouse emissions in a fair process that ensures more vulnerable communities are positively impacted and supported. Approval of the Bill through Parliament would place a legal obligation on our government to deliver this strategy and much needed accountability to deliver the targets we set out and agree to deliver at COP26.

The three COP outcomes campaign focuses on three specific commitments from COP26:

1. Creation of a joint emergency strategy for climate and nature
2. Commitment to the carbon budget for 1.5C
3. Going nature positive by 2030

Support for the CEE Bill and three COP Outcomes campaigns by the UK Health Alliance on Climate Change is further evidence that the global health community are determined to ensure their voice is heard in the need for meaningful action on climate change for the benefit of all our health.

The more people that get behind these movements, the more our impact will be felt. The onus is on every one of us to play our part.

Further information:

• Sign up to the zero hour campaign here: https://www.ceebill.uk/cop26-cop15 
• Find out more about the CEE Bill here: https://www.ceebill.uk/bill 
• Sign up to the health climate prescription letter here: https://healthyclimateletter.net/ 
• Health editorial can be viewed here: https://www.bmj.com/content/374/bmj.n1734

Elaine Mulcahy, Director of the UK Health Alliance on Climate Change.

Competing interests: none declared.

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But its implementation continues to be patchy. In healthcare, the co-creation of solutions alongside clinicians, patients, and citizens who will use them or benefit from them is both logical and necessary. How can we ensure solutions meet their needs if not? However, environmental challenges exist which hinder the speed of advancement in translating this concept from theory to practice. 

Healthcare innovation holds great promise for solving some of the significant healthcare challenges facing Europe (and, indeed, the rest of the world) today—an ageing population, an epidemic of non-communicable diseases, and growing costs of care within healthcare systems that are already cost-constrained. 

Healthcare innovation communities can harness entrepreneurship across research, academia, industry, and healthcare delivery to identify where innovation could have a defined impact, and accelerate solutions to market that can drive efficiencies, reduce costs, and improve patient outcomes. The aim of these communities is to deliver societal impact in the form of widespread, demonstrable socio-economic improvements to society. Societal impact is constructed through the connection between innovation and society, measured against the benefits that really matter to people, and assessed on ethical, legal, and social principles.

For innovative products and services to integrate seamlessly into existing frameworks, they must be built with end users. In healthcare, this includes clinicians, patients, citizens, informal caregivers, and possibly other stakeholders depending on the specificities. Yet, companies working in healthcare often find it difficult to engage directly with such stakeholders when developing their solutions, due to issues such as privacy, ethical, and legal concerns. 

A 2020 report published by the EIT Health Think Tank outlined the “innovation pathway,” or route to market, for health products and services, identifying that co-creation must extend the full length of the pathway. From ideation and identification of the need a technology aims to meet, to testing and proof of value, to launch and adoption, stakeholders are a driving force throughout. In fact, when clinicians, patients, and citizens are fully involved in the process, they are powerful advocates for the implementation of healthcare innovation that meets their needs. This is important in Europe, where we have a lot of fragmentation in the reimbursement and adoption of innovative solutions.

Access to, and engagement with, such stakeholders, however, remains a challenge for innovators as outlined in the report—access to real-world settings for testing (i.e., hospitals and clinics), lack of trust in the process of co-creation between commercial entities and clinicians or patients, misalignment, or indeed mismanagement of misalignment between intended stakeholders, and lack of funding and incentives to facilitate collaboration, are all referenced as barriers. 

Such barriers, however, are certainly not insurmountable, and the rewards associated with overcoming them are significant. With the right frameworks in place, co-creation is feasible and leads to a much greater chance of success—both commercially and in terms of patient outcomes. Therefore, we must continue to encourage and champion co-creation across the healthcare sector.

Within the EIT Health community, we provide a framework from which co-creation can take place, respecting legal and ethical concerns and utilising our vast network to provide the means for collaboration to take place. We do this in a number of ways, including education for patients and citizens, entrepreneurship programmes to support innovators with co-creation or patients in creating their own innovative solutions, and providing “test beds,”or other opportunities for clinicians, patients or citizens to connect with innovators to input into, and test, new potential solutions. 

If the right conditions are provided, new products and services can be developed to offer alleviation of the burden facing healthcare services including preventing disease, speeding up diagnosis and care, offering remote care, improving patient outcomes, and reducing costs of care. But this is best achieved when we work together to design solutions. 

There are still barriers we must overcome, and one of which is standardising approaches and opportunities for co-creation. We would like co-creation in healthcare to become a standard and well-practiced principle across Europe. Only then can we be sure that the solutions we offer to Europeans are truly meeting their needs. 

Jan-Philipp Beck, CEO, EIT Health—an EU funded initiative that works to improve health in Europe

Competing interests: none declared.

The virtual EPF Congress takes place from the 26-29 October 2021. Registration and Programme details available at www.epfcongress.eu. For more information about the European Patients’ Forum (EPF), visit www.eu-patient.eu.

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The covid-19 pandemic has highlighted the huge material footprint required to support frontline healthcare in the NHS. The NHS contributes 5.4% to the UK’s climate footprint. [1] Pre-covid, the NHS had made great strides in tackling waste and contributing to its goal of a net-zero future. In 2019, the NHS had achieved an estimated 62% reduction in its 1990 emission levels. [2] 

However, six months after the initial outbreak of covid-19, the UK government had procured 32 billion items of personal protective equipment (PPE) worth £12.5 billion. [3] Between February 2020 and February 2021, the NHS used more than 1 billion surgical masks. [4] This would generate nearly 3 million kilograms of waste according to a recently published study, which estimated that 123,000 tonnes of unrecyclable plastic waste would be generated in a year if every person in the UK used one disposable surgical mask per day. [5] 

To support the long term plan of achieving net-zero and other sustainability commitments, more systemic approaches to designing out waste and greenhouse gas emissions are needed within the NHS. Current practices of incineration, landfill, and low-value recycling need to be replaced by a “circular” mind-set, where everything is designed, procured, and used for as long as possible, at their highest value, only then recycled back into new products or for alternative high-quality uses. [6] Such approaches are available even during a pandemic. 

For example, a Sterimelt machine, which aims to recycle and repurpose wasted surgical masks and other plastic, was installed during the pandemic at the Royal Cornwall Hospitals NHS Trust. [7] A recent study found that the carbon impact of anaesthetic gases can be as small as intravenous anaesthetics, by shifting from desflurane to sevoflurane and employing effective vapour capture technologies. [8] A trial of world’s first bespoke net-zero clinical laundry study for Personal Protective Equipment (PPE) piloted across a range of NHS sites for gowns, aprons, coveralls and surgical masks found that the service has the potential to save the NHS an estimated £9m per annum, displacing 5% of the disposable market share in 2022. [9] At a product level, the re-manufacture of electrophysiology catheters was found to reduce its carbon emissions by a minimum of 50% [10]; while a “circular” mindset led to the development of a technology that can transform materials of clinical wastes into feedstock chemicals. [11] At an organisational level, monitoring and increasing the use of building space, shifting to performance-based business models for expensive equipment and lighting, and altering procurement rules to favour remanufactured products are all actions that are needed to create large scale system changes to break out of the current linear model and ways of thinking. 

However, the human element is crucial during this transition. Continuous monitoring and widespread education and awareness training are needed to ensure the correct choices are made and implemented on a daily basis. A recent study highlights that the long list of factors that have contributed to the embedding of single-use practices and norms in US healthcare including: just in time purchasing systems to minimise storage; planned obsolescence from manufacturers and suppliers; mistaken belief that re-use impacts risk and patient safety; concerns about liability and cost; confusing classificatory and asymmetric regulatory frameworks; and split roles and incentives for taking action. [12]

Currently, most medical sites do not have a post-consumption treatment system for composting plastics. The popularity of single-use compostable plastics in a pandemic is understandable, but concerning, as single-use plastic could become a regrettable and expensive option. [13] While staff perceptions of what products can and cannot be recycled in the local area is an on-going issue within the NHS irrespective of the covid-19 pandemic, re-use approaches would remove much of the complexity and confusion about legacy recycling models. 

Some may consider that the plastic crisis caused by the need to use large volumes of PPE during the pandemic is an environmental “price worth paying” during an unprecedented public health emergency; however, the reality of the climate and environment emergency means a step-change is required across the NHS irrespective of the global pandemic. While the process will be difficult, evidence from other resource and asset-heavy sectors demonstrates the positive business cases and low costs of a circular economy approach towards net-zero. [14] It requires leadership from the NHS to hold the corporate and suppliers accountable, and the ambition to create large scale improvement. 

Peter Hopkinson is the co-director of the Exeter Centre for Circular Economy. 

Richard Smith is the inaugural deputy pro-vice Chancellor for the University of Exeter Medical School. 

Lora Fleming is based at the European Centre for Environment and Human Health (University of Exeter Medical School). 

Karyn Morrissey is a Professor at the Department of Technology, Management and Economics Sustainability, Technical University of Denmark.

Xiaocheng Hu is a research fellow at the Environment and Sustainability Institute, University of Exeter.

Competing interests: none declared.

References:

1. Health care climate footprint report. Health care without harm. 2019. https://noharm-global.org/documents/health-care-climate-footprint-report (Accessed: 21/03/ 2021)
2. NHS report. Delivering a ‘Net Zero’ National Health Service. 2020. https://www.england.nhs.uk/greenernhs/publication/delivering-a-net-zero-national-health-service/ (Accessed: 21/03/ 2021)
3. National Audit Office report. The supply of personal protective equipment (PPE) during the COVID-19 pandemic. Department of Health and Social Care. National Audit Office. 2020. https://www.nao.org.uk/report/supplying-the-nhs-and-adult-social-care-sector-with-personal-protective-equipment-ppe/ (Accessed: 21/03/ 2021)
4. Experimental statistics – personal protective equipment distributed for use by health and social care services in England: 31 May to 4 July 2021. Department of Health and Social Care. 2021. https://www.gov.uk/government/statistics/ppe-distribution-england-31-may-to-4-july-2021/experimental-statistics-personal-protective-equipment-distributed-for-use-by-health-and-social-care-services-in-england-31-may-to-4-july-2021 (Accessed: 21/03/ 2021)
5. Allison AL, Ambrose-Dempster E, T Aparsi D, Bawn M, Casas Arredondo M, Chau C, Chandler K, Dobrijevic D, Hailes H, Lettieri P, Liu C. The environmental dangers of employing single-use face masks as part of a COVID-19 exit strategy. UCL Open: Environment Preprint. UCL Press. 2020.
6. Hopkinson P, Zils M, Hawkins P, Roper S. Managing a Complex Global Circular Economy Business Model: Opportunities and Challenges. California Management Review. 2018;60(3):71-94.
7. Hu X, Davies R, Morrissey K, Smith R, Fleming LE, Sharmina M, Clair RS, Hopkinson P. Single-use plastic and COVID-19 in the NHS: Barriers and opportunities. Journal of Public Health Research. 2021 Aug 4.
8. Hu X, Pierce JT, Taylor T, Morrissey K. The carbon footprint of general anaesthetics: A case study in the UK. Resources, Conservation and Recycling. 2021 Apr 1;167:105411.
9. Dawson T. UKRI Revolution-ZERO NHS PPE Feasibility SBRI. 2019. 
10. Schulte, A., Maga, D., Thonemann, N. Combining Life Cycle Assessment and Circularity Assessment to Analyze Environmental Impacts of the Medical Remanufacturing of Electrophysiology Catheters. Sustainability. 2021;13(2): 898.
11. Oster K, Tedstone A, Greer AJ, Budgen N, Garforth A, Hardacre C. Dehydrochlorination of PVC in multi-layered blisterpacks using ionic liquids. Green Chemistry. 2020;22(15):5132-42.
12. MacNeill AJ, Hopf H, Khanuja A, Alizamir S, Bilec M, Eckelman MJ, Hernandez L, McGain F, Simonsen K, Thiel C, Young S. Transforming The Medical Device Industry: Road Map To A Circular Economy: Study examines a medical device industry transformation. Health Affairs. 2020 Dec 1;39(12):2088-97.
13. Goel V, Luthra P, Kapur GS, Ramakumar SS. Biodegradable/Bio-plastics: Myths and Realities. Journal of Polymers and the Environment. 2021 Mar 6:1-26. 
14. EMF. Universal circular economy policy goals: enabling the transition to scale. The Ellen MacArthur Foundation. 2021. https://www.ellenmacarthurfoundation.org/publications/universal-circular-economy-policy-goals-enabling-the-transition-to-scale (Accessed: 21/03/ 2021)

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The importance of continuity of care has been amplified for me during the pandemic, both as a patient with type 1 diabetes for 35 years, and as a paediatric diabetologist. As a patient, I don’t want to have to repeat my story every time I see a new doctor, especially the difficult things that need discussing. As a doctor, how do I learn whether the advice I gave was correct, and how do I find out what my patient really wants from me, or when to gently nudge them in a different direction or provide reassurance? Knowledge of the patient allows me to be a better doctor, to give an individual approach, rather than responding to a blood glucose value.

Plenty of evidence exists about the benefits of continuity of care across many health conditions and ages. It improves satisfaction, reduces unnecessary referrals, and lowers mortality. [2,3]  Continuity will matter more to some patients (and doctors) and more in certain conditions, than others. Some will sacrifice continuity if it means a long wait. Others who find the relationship therapeutic as much as the medicine, will rank continuity more highly. Managing and understanding that must be central to the discussion. 

A snapshot online survey of 80 paediatric diabetes consultants in the UK, collected for a debate on continuity of care, during the British Society of Paediatric Endocrinology annual conference, identified that only 47% of consultants are able to practise continuity of care, despite the acknowledgement that it was important for their continued professional development and job satisfaction, and for their patients. 

So if continuity is known to be beneficial, why is it not practised more often? One barrier is infrastructure and training: how do junior doctors get experience without moving to different specialties and clinics? If consultants need to be elsewhere, like a ward round or on holiday, should the clinic be cancelled? All this needs to be worked out and there isn’t a one-size-fits-all solution. 

Many healthcare professionals have had to set up virtual clinics overnight. This drive towards innovation is a good thing: it has cut bureaucratic processes, can save money for the health system, and save time for the patient. As we hopefully start to emerge from the pandemic, the NHS and other healthcare systems will need to redefine how we function. Virtual working will be on the table, but before setting it up indiscriminately, we need to pause, and consider how it can best be used. The patient should remain at the centre, and be offered choice, to maintain and improve patient satisfaction and outcomes. Patient continuity, especially for chronic conditions, should not be unwittingly sacrificed: forming a healthy attachment between doctor and patient is at the core of how we relate and trust.

If the pandemic has taught us about the importance of human relationships, it has also taught us that if there is enough will, a solution can be found.

Rachel Besser is a consultant paediatric diabetologist at Oxford University Hospitals NHS Foundation Trust and author of Diabetes Through the Looking Glass – seeing diabetes from your child’s perspective. @BesserBesser

Competing interests: none declared.

References:

1. Car J, Choon G,  Koh H, Foong PS, Wang CJ. Video consultations in primary and specialist care during the covid-19 pandemic and beyond  BMJ 2020; 20;371:m3945. 
2. Pereira Gray DJ, Sidaway-Lee K, White E, Thorne A, Evans PH. Continuity of care with doctors—a matter of life and death? A systematic review of continuity of care and mortality. BMJ Open 2018;8:e021161.
3. Helen Salisbury H: Measuring continuity of care BMJ 2019;3;367:l6567. doi: 10.1136/bmj.l6567. 

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There are a number of steps that could be followed to safely implement the third primary vaccine dose programme for immunocompromised patients in England’s NHS.

Identify your target population. This is an essential first step in any vaccination programme (or in any public health programme). Identifying the target population requires searching NHS medical records held by hospitals and general practices.

Clinical diagnoses (such as renal transplant) have to be turned into lists of clinical codes. This requires collaboration between hospital doctors, GPs, other health professionals and health informatics specialists to produce the code lists based on the ICD-10, SNOMED, and Read clinical codes that are used by NHS organisations. 

Patients need to be identified who were prescribed medications around the time of their first two doses of covid-19 vaccine that have been identified by the JCVI and specialist groups as possibly leading to a weaker response to their vaccinations. This might not be possible for GPs to do if they did not prescribe the medication themselves, as is the case for many specialised drugs used for these patients.  

There needs to be adequate consultation with organisation such as NHS Digital, general practices, primary care networks, specialist medical societies, and patient organisations (for example, Versus Arthritis, Blood Cancer UK, Crohn’s & Colitis UK and Kidney Care UK amongst others).

Once an agreed form of words and a unified approach have been reached, there should be a clear public health announcement via reputable sources, and NHS web pages should be made available with clear easy to understand information and FAQs for clinicians, patient support organisations, and the public. Clinicians and their teams should ideally be made aware of any announcements from NHS England before the public so that they are able to answer queries from patients, parents, and carers.

Those working at NHS 119, vaccine sites, or the national covid-19 vaccine call centres must be fully briefed and updated on significant changes before any announcements are made, so that patients calling with queries or to book their third primary doses are not met with a confused response and a lack of a clear process on how to access their vaccines (which damages public trust and confidence, and increases vaccine hesitancy).

Programmes that use clinical codes to search NHS medical records have to be written. These require testing and debugging to make sure they work correctly on each different clinical record system used by the NHS. The NHS does not have a unified electronic medical record system and individual NHS Trusts and general practices will have different systems. These programmes need to be written centrally wherever possible to prevent local areas producing their own versions that may differ from each other and thus not identify patients correctly. This is more straightforward for general practices than hospitals because most general practices mainly use of one two electronic medical record systems (EMIS or SystmOne). The situation is more complex in NHS hospitals because of the many different IT systems used.

Once the programmes are written, they need to be run by local NHS teams as it seems that NHS England is not yet able to run these searches centrally for all of England. In the case of general practices, local CCGs or GP Federations should be able to run the searches to identify patients. Hospitals will also need to run searches to identify eligible patients. The NHS should also make use of national disease registers, such as the NHS Blood and Transplant registry, for patient identification wherever possible.

The list of patients generated by the programmes have to be cleaned to remove duplicates and any patients identified in error. Patients who may be unsuitable for vaccination such as the extremely frail or terminally ill need to be removed from the lists. Local NHS teams also need to consider how they approach patients who may have previously refused vaccination.

Patients then need to be contacted about the vaccinations. Most general practices are no longer involved in the covid-19 vaccination programme. These invitations therefore need to come from organisations that are offering covid-19 vaccines. This might include hospital clinics, NHS vaccine centres, or GP-led vaccine hubs in areas where GPs are still offering covid-19 vaccines.

IT systems that record cCovid-19 vaccinations (such as Pinnacle) need to be able to record the third primary dose correctly; so that it is not recorded as a standard booster dose or as another first or second dose. This ensures the patient’s vaccination status is accurate, that audits can be done accurately and that recalls can be generated for a booster in six months. Details of the vaccination also needs to be uploaded correctly into the patients’ usual electronic health record.

The NHS app needs to correctly display that this is indeed a third primary dose, and that the patient is fully vaccinated; and IT systems need to ensure that the patients can then also be invited for their booster dose (effectively, a fourth vaccine dose for this special group of patients) in due course (typically likely to be six months after the third primary dose). A system for recording vaccines given abroad should also be made available. 

Patients must remember that in most parts of England, general practices cannot offer a covid-19 vaccine or book an appointment for one. In these circumstances, NHS 119 or local NHS covid-19 vaccine centre need to do this. To make access to vaccinations easier for patients, the NHS should ensure that a large number of locations are offering vaccinations so that patients can receive these close to home and do not have to travel long distances. Arrangements for vaccination also need to be made for the residents of care homes and for people who are housebound.

NHS medical records are not always accurate or up to date. Each local area needs to have a named person who patients can contact if they feel they have been missed off the list incorrectly; or to help patients who continue to have any difficulties booking appointments.

In order to provide a booster (fourth) dose for this group after six months, around April 2022, NHS IT systems need to be accurate and record third primary doses correctly and not as booster doses. This will ensure that this vulnerable group of patients do not experience further difficulties or delays in booking these appointments.  

All these steps could have been better planned and communicated by NHS England; which would have made the process clearer for frontline NHS staff; as well as making it easier and less stressful for patients to receive their third primary Covid-19 vaccine dose. A well-planned and implemented vaccine programme maintains confidence in the vaccine programme which may reduce vaccine hesitancy, and helps patients and clinicians alike, improving vaccine uptake and reducing pressures on the NHS. It is essential that the problems experienced by immunocompromised patients in accessing their third primary Covid-19 vaccine doses are not repeated, appropriate lessons learned and steps taken by NHS England to ensure accurate recording of vaccinations and recall for future vaccinations for our most vulnerable patients.

Azeem Majeed, Professor of Primary Care and Public Health, Imperial College London, Twitter @Azeem_Majeed

Simon Hodes, NHS GP Partner, Watford, UK and private general practitioner at the Cleveland Clinic London. Twitter @DrSimonHodes

Fiona Loud, Policy Director, Kidney Care UK, Twitter @FionaCLoud

Liz Lightstone, Professor of Renal Medicine, Imperial College London, Twitter @kidneydoc101

Competing Interests: We have read and understood the BMJ policy on declaration of interests. AM and SH are GPs and have supported the NHS covid-19 vaccination programme. LL is a nephrologist who has supported the NHS covid-19 vaccination programme and is actively researching vaccine responses in immunocompromised patients. FL works for a kidney patient support charity which supports the NHS covid-19 vaccination programme. We have no other competing interests.

Acknowledgements: AM is supported by the NIHR Applied Research Collaboration NW London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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The word “snowflake” entered English in the early 18^th century, first recorded in a pantomime called Cupid & Psyche, or, Colombine-Courtezan, based on the tale told by the Numidian writer Apuleius (c124–c170) in The Golden Ass: “Soft as the cygnet’s down his wings, And as the falling snowflake fair”. This was a surprisingly late entry, considering how early its separate components, “snow” and “flake”, had appeared. The earliest instance of “snow” cited in the Oxford English Dictionary is in the Vespasian psalter, from c825 AD: “Se seleð snaw swe swe wulle”, which is an Old English translation of the Latin version of Psalm 147, verse 16: “qui dat nivem quasi lanam”, or in the original Hebrew

which literally means “the giving of snow like wool”, more clearly translated as “he spreads snow like a woollen blanket”. “Flake” first appears, linked to snow, in Chaucer’s House of Fame (c1384): “As flakes fallen in great snowes”.

But words evolve and, like many other words, “snowflake” has accrued many other meanings.

Snow-buntings have white bodies and what appear to be flecks of snow on their wings. Starting in the late 17^th century, they were therefore called snow-flecks. Then, in the late 18^th century, that became corrupted into “snowflakes”.

At about the same time, William Curtis published his Flora Londinensis, which included the picture of a purple foxglove that William Withering used as the frontispiece to his 1785 monograph on digitalis, An Account of the Foxglove. Curtis gave the name snowflake to the Leucoium aestivum, to distinguish it from Galanthus species of snowdrops, both members of the family Amaryllidaceae. These plants contain galantamine, a cholinesterase inhibitor that has been used to treat dementias; the results have been unimpressive in both Alzheimer’s disease and vascular dementias.

As in the psalm, snow and wool also come together in the use of the word “snowflake”, when it describes a method of weaving woollen cloth.

A snowflake is also the name given to a hairline crack in metal, arising when the metal has not been allowed to cool down sufficiently slowly, and described in a 1919 issue of the Bulletin of the American Institute of Mining Engineers as a “white silvery area, which always has the appearance of being of a very coarsely crystalline structure”.

Snowflakes appear in mathematics too, and I discuss one instance in the Interesting integer section below. Here is another. Draw an equilateral triangle (Figure a; black). Now on the middle third of each side draw another equilateral triangle and erase its base (b; red). Now repeat that on each available side in the new shape (c; blue). If you continue doing this you get a shape that resembles a snow flake (d). This is a fractal pattern, one that has the same local characteristics no matter how high a magnification you choose to look at it. The boundary is of infinite length, because you can go on adding new triangles forever. However the area it encloses is finite and is 60% larger than the area of the original triangle.

One more meaning of “snowflake” remains to be explored.

Ah, well, I should have expected that to happen

Finally, an aphorism from a book called Myśli nieuczesane nowe (More Unkempt Thoughts, 1964) by the Polish poet Stanisław Jerzy Lec: Żaden płatek śniegu nie czuje się odpowiedzialny za lawinę. No snowflake feels responsible for an avalanche.

Jeffrey Aronson is a clinical pharmacologist, working in the Centre for Evidence Based Medicine in Oxford’s Nuffield Department of Primary Care Health Sciences. He is also president emeritus of the British Pharmacological Society.

Competing interests: none declared.

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Levels of food insecurity among households with children were already high before the pandemic and have increased substantially since March 2020.      

14.6% of households with children have experienced food insecurity in the past six months—2.5 million children live in these households. These levels are 27% higher than before covid-19.    

Food insecurity in the past month in households with children (11.0%) has been almost twice as high as households without children (5.8%).

The case for action is clear. Food insecurity is a complex mix of malnutrition and stress. You will know the central importance of nutrition during childhood for development of all organs, particularly the brain. Poor childhood nutrition leads to poor physical and mental health in childhood, but also worse adult health, poorer cognitive development, and lower later productivity and wellbeing. Stress during childhood is also toxic to the developing organism, leading to higher adult ill health and poorer wellbeing. There is increasing evidence that this combination harms children right now and harms the adults they will become.

A recent NIHR review found that food-insecure children had poorer physical health across a wide range of indicators, from greater levels of asthma and dental caries, to higher levels of hospitalisations, as well as lower wellbeing and quality of life and higher levels of homelessness and substance use.

Particularly worrying is evidence from a large recent survey of English school-children during lockdown, which showed that those who experienced food poverty were more likely to report deteriorating wellbeing during lockdown and had three times the risks of having depression or anxiety. 

Inequalities are widened by food insecurity. The data are clear that food insecurity is more common among children living in poverty. Food insecurity in childhood is part of the way that the social determinants of health get “under our skin” in early life, create and widen health inequalities, and determine our health across our lifespan. 

The healthcare costs that food insecurity brings are significant and risk being a larger burden on the public purse for the next 50 years. Data from Canada show that compared with total annual health care costs in food-secure households, adjusted annual costs were 32% higher in households with moderate food insecurity and 76% higher in households with severe food insecurity: These costs are in excess of costs related to obesity, which is of course related to food insecurity. 

The recommendations in the National Food Strategy represent an evidence-based way forward. Three recommendations are key to reduce food insecurity amongst children.

• The Healthy Start scheme targets the youngest children.

• Free School Meals and the Holiday Activities and Food Programme together ensure that children at risk of food insecurity have access to at least one high quality meal a day, both in and out of the school term.

Each of these is achievable, effective, able to be rapidly deployed and represent good value for money.

Food insecurity is toxic for our children and a threat to the future of the next generation and our prosperity as a country.  

I urge you to put your support behind adopting these recommendations and asking the Government to prioritise children’s health and wellbeing in the upcoming Spending Review.

Russell Viner is professor of child and adolescent health at UCL. He was President of the Royal College of Paediatrics and Child Health from 2018-2021 and a member of SAGE during the covid-19 pandemic. 

Competing interests: none declared.

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This was the final session of the inquiry and Tony O’Sullivan, co chair of Keep Our NHS Public, began by reminding people of some stark facts that had emerged during the previous sessions. One third of all covid deaths – 47,000 – had been of residents in care homes. Disabled people accounted for 6 out of every 10 deaths. Black men were 4 times more likely to die than their white counterparts. And still the government continued to reject basic public health measures, including a refusal to support those self-isolating as they might “game the system” for their £500.

Michael Mansfield QC promised that the inquiry would be publishing the “manifestly obvious” findings as soon as possible, along with urgent recommendations to the government. He reminded people that the object of the inquiry had always been to learn lessons and save lives.

The first witness was Deepti Gurdasani, senior lecturer in machine learning at Queen Mary University London. Her research involves understanding the impact of different interventions on covid, pandemic growth, and how to synthesise evidence into policy

Asked what she thought of government strategy in response to the pandemic, Gurdasani said it had amounted to negligent manslaughter, and perhaps not even negligent as the government had been fully informed of the risk to public health, of suffering and mass deaths, but went ahead anyway. Government policy from the beginning had been essentially herd immunity or “living with the virus,” accepting that deaths were inevitable. As a result, over 150,000 had died in the UK, and a million were living with long covid, including “unforgivably,” 30,000 children.

“Our government doesn’t care about ‘acceptable’ deaths, because they’re in vulnerable individuals. They’re in ethnic minority groups, key workers, frontline workers, they’re in people who live in deprived areas, and people who’ve been left behind, they’re in the disabled and the homeless. As a society we can’t accept that.”

The public had been told that these deaths were inevitable, but many countries, including densely populated ones, had managed to avoid such a massive impact on their societies.

“The values that have been inherent in our government’s response have been a lack of value for life, lack of compassion, and a lack of consideration for people’s suffering.”

Gurdasani said that government strategy had been grounded from the beginning in “exceptionalism.” They had rejected the public health measures that other countries were taking, for example abandoning quarantine and the test, trace, and isolate system (TTIS) in March, saying these measures were “only appropriate for low and middle income countries.” As a result, lockdowns became necessary, which other countries, for example in South East Asia, largely managed to avoid. 

Other poor decisions involved putting TTIS in the hands of a private service “that hasn’t delivered,” asking companies who had no relevant experience, to manufacture ventilators, and ignoring established local companies who offered to make personal protective equipment (PPE) while awarding contracts to those with no experience. Operation Moonshot was a recent example of a very expensive exercise that not only hadn’t helped our exit from the pandemic, but whose tests have been recalled over safety concerns. 

In brief, the government had put their faith in technology rather than basic public health measures, but had not consulted the experts in those technologies. They had also failed to consult the NHS, public health, and local authorities. As a result the UK still hadn’t sorted out aerosol transmission, with no appropriate ventilation in schools and work places, no functioning Test, Trace, Isolate and Support (TTIS), and no coherent mask policy. The government had persuaded the public that lockdowns were the only way to control the virus whereas, as other countries had shown, they represent a failure of response. The answer was always to get on top of the virus through basic public health measures.

Gurdasani felt that it was never too late to return to classic public health measures, which included a functioning TTIS and practical and financial support for those self-isolating. She said the government’s excuse that the public are “really tired of restrictions” was nonsense. The public had always been “ahead of the government,” and it was the government themselves who hadn’t wanted to put restrictions in place.

She then turned to the fact that government strategy essentially relied completely on vaccines.

“We’ve chosen a very risky strategy by putting all our eggs in the vaccine basket, which we didn’t need to do.”

The risk lay in the fact that the government weren’t protecting the vaccines against variants, which would require comprehensive restrictions at borders and elimination of the virus in the community. Other countries such as Australia and New Zealand had managed this, whereas as we had imported highly contagious variants.

Looking ahead Gurdasani wanted the government to adopt a policy of elimination for the virus by fixing TTIS, putting it in the hands of local authorities, and to prevent new variants coming into the country through a comprehensive border policy. “That is completely achievable.” She wanted a focus on stopping aerosol transmission including an investment in better ventilation for schools and workplaces. Finally she wanted the government to help the roll out of vaccines around the world, instead of practising vaccine nationalism and at the same time cutting foreign aid.

“People who think that our pandemic strategy has been a success must look at the number of deaths, the number of people suffering with long covid, but also the impact on our economy and the fact that we’ve had restrictions for 16 months, three lockdowns, four months of children being out of education. How is this even remotely a success?”

“The media never actually discusses the response in other countries…so people aren’t aware that life could be so different had we adopted the elimination strategy last year, or even learned much later and adopted it more recently. It’s very, very clear that countries that valued life, that treated deaths as preventable are the same countries that have done best economically.”

The next witness was Stephen Cowan, leader of Hammersmith & Fulham Council. He was asked what the role of local government had been during the pandemic. He noted that we have ‘a very centralised system’ in the UK, which means that everyone in local government ‘looks to Westminster to tell them what to do’. Unfortunately, in the early days of the pandemic it seemed that the government’s focus was elsewhere, with little direction coming out of central government. This was at odds with similar countries, who were much quicker to take action.

“The government wasn’t on top of this in January/February. The prime minister wasn’t talking about it. And he’s a very strong leader of his party, and therefore the government. And if he wasn’t engaged, I suspected the government wasn’t engaged. Or it had a different agenda.”

In February, Cowan could see what was going on internationally, for example in Italy, and stopped looking to the UK central government for advice. He told his chief executive to move the borough onto a civic emergency footing as the pandemic was sure to arrive in London. They were the first council to do this.

“We decided to act on the side of caution and to do everything we could to protect people.”

He locked down local parks and at the same time organised a letter from all London Councils to the prime minister demanding a lockdown. This was sent on 22 March 2020, and on 23 March Boris Johnson announced a national lockdown.

Overall Cowan was very critical of Boris Johnson, whose attention appeared to be “elsewhere.”

“He’d gone to a rugby game and had been boasting about shaking hands with people in a hospital. And all these were indications that his head wasn’t in the place we needed it to be. Maybe they were going for herd immunity.”

Because of the lack of central direction, local councils found themselves in the front line. For example in early April, Cowan heard about deaths in Italian care homes because Italians had allowed people with covid back in to the homes. He arranged for PPE in care homes in his borough, introduced testing for staff and patients and also training for staff, most of whom have very little relevant training.

He also promoted mask wearing from May 2020, whereas the government dithered and made that decision later in the year. He felt that local government had really risen to the occasion, with a ‘wartime operation’ aimed at protecting people, but then central government would knock them back and tell them not to act.

“The public sector ethos came into its own at a ground level. And the lesson is that if you empower people, then they will rise to the challenge. I think people were at their best in the public sector at that time…it’s about trusting people on the ground.”

Going forward Cowan wanted the government to empower people on the ground and to give real powers to local government

The next witness was Matt Western, Labour MP for Warwick and Leamington, who submitted evidence via a written statement. Western’s evidence concerned the Leamington Lighthouse laboratory project, one of two “megalabs” to be set up for large scale covid testing. He was notified of this in November 2020, after a public announcement. There had been no prior discussion with himself nor with local authorities.

The government said the project would create up to 2,000 jobs and would open early in 2021. However at the time that he submitted his evidence (16/6/21), there was still no start date available. Meanwhile he was hearing from constituents who had left jobs after being recruited to work in the new lab and were consequently now unemployed.

A report compiled by a local campaign group had highlighted a number of concerns. It questioned why the government had chosen to set up a brand new laboratory rather than expanding existing local NHS pathology services. It raised concerns regarding lack of regulation, accreditation, and quality standards of the facility and its employees, which fell far short of the requirements within NHS based laboratories. A contract to run the lab had been awarded without being put out to tender and private companies had been involved in recruiting staff. Some staff and suppliers were the subject of non-disclosure agreements. It had been impossible to find out how much the project was costing the tax payer.

Finally, earlier in the year there had been an outbreak of covid among the staff who were getting the site up and running. He felt it was “an embarrassment” that the government couldn’t even protect staff working on a large scale covid testing site.

“There is a clear lack of transparency, waste and cronyism surrounding this Government’s contracting process throughout this pandemic, which equally applies to this project.”

In summary his concerns were the total lack of transparency around the project, the unnecessary privatisation of NHS services, and the delay of the project. He wanted transparency and accountability from those in government who were responsible. 

“There have been too many failures and too much taxpayers’ money squandered by this Government for us to allow ministers to avoid accountability in the way they are at the moment.”

The next witness was Professor Jonathan Portes, who had been a government economist for 25 years and is now professor of economics and public policy at King’s College London. He said there was a clear consensus across a broad spectrum of economists that during the pandemic the right thing to do from a health point of view was also the right thing to do from an economic point of view.

“It was better to take whatever measures were necessary to address the health crisis, even at the cost of economic output in the short term, because the alternative of not dealing effectively with the health crisis would actually lead to greater and longer-term economic losses.”

In response to a question about public expenditure during the pandemic, he felt that money spent on business support schemes was “money fairly well spent” and appropriate from a social and economic perspective. On the other hand, that spent on the procurement of PPE was clearly “hugely wasteful and occasionally corrupt,” and that the expenditure on test and trace was badly spent and mismanaged, and had led to adverse outcomes. He felt that in general the Government had erred on the side of spending too little and he was very critical of “the frankly ludicrous levels of sick pay that we pay in this country.” He said that with regards to sick pay the UK is “not only lower than, I believe, anywhere else in the OECD, but lower by quite a long way than almost all of our obvious major comparators.!

“The biggest obvious policy error has been the failure to raise sick pay or to put in place an effective system of sick pay that incentivises people …to take time off work to self-isolate. That has been a real false economy, which has undoubtedly inhibited the effectiveness of test and trace, and therefore probably led to more people getting sick than needed to be, prolonging the pandemic unnecessarily.”

Portes then addressed the effects of the government’s “austerity” and deficit reduction policies in the decade prior to the pandemic. These had resulted in a slowing down and in some cases a reversal of the social progress made in the previous decade, and this had particularly been the case for lower income groups. He felt the policies had left us more vulnerable to the crisis and that this was reflected in the structural inequalities which had emerged.

“There was a very, very high differential mortality gradient where the most disadvantaged groups have clearly been most vulnerable both to contracting covid and to getting seriously ill and dying from it. And again, I think there’s a clear relationship between those two – between what happened in the run up to 2020 and what happened during the pandemic itself.”

Portes said more austerity would be the wrong response to the pandemic. He gave as an example the funding needed to address the damage done to children’s education during the pandemic. It had been estimated by the Institute for Fiscal Studies that this could represent a cost to the country of £350 billion over the next 40 years, but when the Education Policy Institute proposed an initial catch-up programme of £15 billion the government’s response had been to offer 10% of that, i.e. £1.5 billion. Given the economic and social case for funding catch up, especially for the most disadvantaged, he found it ‘almost impossible’ to see what the justification for that decision was.

“I really find that the Government’s decision on this almost incomprehensible from almost any perspective.”

Going forward he said government debt certainly wasn’t “the first, second, or even fifth most important economic problem the country faces at the moment.” What the Government needed to do was whatever was necessary to definitively suppress the pandemic and spend whatever it takes to do that. And after that, to reopen in a safe and controlled way and to get back to normal as quickly as possible.

“What we have learned is that we shouldn’t be worried about spending money in the short term.”

The next witness was Jean Adamson, representing Covid-19 Bereaved Families for Justice, and also an independent consultant to the Care Quality Commission.

Adamson’s elderly father had died in a care home after contracting covid during the first wave. Following his death, she had made a formal complaint to the home, including questions about the use of PPE, hospital discharges to the home, and the number of covid related deaths in the home. She noted a “lack of transparency and honesty” in the replies she got, including a refusal to allow her to see his unredacted care records. She had then sought support in the Bereaved Families for Justice group.

“We all share the one thing in common, we were looking for answers. I needed to understand, and our members need to understand why our loved ones died in a place where we expected them to be safe.”

Adamson said the group had not been able to get those answers and in particular felt very let down by the Care Quality Commission (CQC), who had refused to release the number of covid related deaths in individual care homes. She felt they had sought to protect the interests of the commercial sector at the expense of the interests of the public and in choosing to hide behind Freedom of Information exemptions their position had become “untenable.”

“We feel very let down by the Care Quality Commission. As the health and social care regulator for England, we thought they would be supportive of relatives, you know, bereaved families.”

As a result of pressure from Bereaved Families for Justice the CQC had since agreed to provide more data. She believed their original refusal to release the care home data was a political one taken to protect the commercial care sector and her experiences had led her to question the motives of the CQC, and their supposed arm’s length status. 

“It just beggars belief actually, where is the commitment to us, the public? The reason the CQC was set up, the very reason they exist, is to protect the public, and to have our interests at heart.”

Going forward her group wanted a public inquiry “now,” and failing that a rapid review in order to learn lessons and make recommendations. The government had not responded to their requests.

“How many more people need to die, how many more lives need to be lost to this virus before we start to learn lessons and prevent further deaths, further tragedies. We have a tragedy on a national scale, unprecedented in our times, and still the Government is dragging their feet.”

The final witness was Michael Bimmler, a barrister specialising in public and human rights law who discussed the legal aspects of the government’s response to the pandemic. Bimmler explained the “no harm” principle which exists in international law, which says that states have a duty to take all appropriate measures to prevent and reduce what is called significant trans boundary harm. This applies to natural disasters, during which states have to take appropriate steps to prevent harms. The greater the risk of the harm at hand, the more efforts are required from the state.

With regard to the pandemic, all states were subject to this duty, so they had a duty to stop further spread of the pandemic, or at least to take such steps as they could to stop the further spread, and to prevent or reduce further outbreaks.

He then discussed International Health Regulations (IHRs), dating from 2005, and adopted by more than 190 states in the World Health Assembly, which place a number of mandatory obligations on states. These include, for example, a duty to develop and maintain the capacity to respond promptly and effectively to public health risks including pandemics, and a duty to base that response on scientific principles and evidence.

These laws raised a number of questions as to whether the UK’s response actually complied with IHRs, including adequate pandemic planning, and a capacity to respond promptly and efficiently. Bimmler mentioned as examples the availability of PPE and ventilators, discharge of patients into care homes without testing, protection of patients in hospitals and care homes, and reaction to the second wave.

He discussed the European Convention on Human Rights (ECHR), in particular the right to life, the right not to be subjected to inhumane treatment, and the right to respect for private and family life. He explained that the government has to take proactive steps to promote these rights by putting appropriate safeguards in place, and that they are systemic duties owed to the public at large, in particular to exposed people. This would include front line workers in the NHS, and the vulnerable such as the elderly and those with pre-existing medical conditions.

“It is quite clear from the case law that acts and omissions in areas such as health care policy, health care provision, health care regulation, are covered by this article to the right to life.”

Bimmler pointed out the “duty to investigate” when a state’s breach of those duties under the ECHR had cost someone’s life. This could range from a coroner’s inquest to a public inquiry if national level policy decisions were involved.

He also mentioned the duty of employers to ensure the health and safety of their employees at work by providing a safe work place with necessary training and equipment (such as PPE), and that a breach of those regulations could be a criminal offence.  

Finally he said that claims against breaches of ECHR could be brought in UK domestic courts but that it was more difficult to challenge breaches of international law. In response to a question about prosecuting those felt to be responsible for failings during the pandemic, he said that individuals can’t be charged with corporate manslaughter, but an organisation, such as the Department of Health and Social Care, could. 

In this last session the inquiry heard a series of damning testimonies. The government’s “austerity” policies had slowed and even reversed social and health progress in the decade before the pandemic, resulting in a widening of social inequalities and a very high differential mortality rate during the pandemic. The government’s attention had been ‘elsewhere’ when the pandemic broke out, and others such as local authorities had had to step in. When the government did respond it was very late and partial, possibly as a result of initially planning to adopt herd immunity.

Witnesses were again critical of the fact that the government by-passed the NHS in favour of the private sector, and condemned the lack of transparency, waste, and cronyism around the contracts involved. They also criticised the fact that there was no effective sick pay system which was thought to have prolonged the pandemic.

Finally the government was accused of manslaughter. There had been no need for the very high number of avoidable deaths in the UK, as other countries had shown. There was a possibility of holding the government to account via legal routes for some of these deaths.

Tony O’Sullivan, co-chair of Keep Our NHS Public, ended the final evidence session of the People’s Covid Inquiry by thanking all those who had participated, including the 41 witnesses, and by joining the Bereaved Families for Justice in calling for a public inquiry now. He said the final report of the inquiry would be out later in the year.

“We are really proud … of what the inquiry has achieved. It set out to look for urgent lessons to be learned now from this coronavirus pandemic and to recommend action that would save lives…”

Jacky Davis, consultant radiologist, founder member of Keep our NHS Public, panel member of the People’s Covid inquiry.

Competing interests: none declared.

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Early in the pandemic, the UK government recognised that certain patients with complex medical conditions, or who were immuno-suppressed through disease or medication, would be most at risk from the complications of covid-19. These patients were advised to take careful infection control precautions, and were classed as clinically extremely vulnerable” (CEV). Among the advice given to them was to “shield” and to facilitate this, they were added to a “Shielding Patients List” (SPL) at their GP practices. Despite GP practices having robust disease registers and arranging seasonal flu vaccine recalls annually for mostly similar patients, NHS England decided to create centrally generated lists for CEV, and sent out letters to these patients. 

Unfortunately, NHS Digital wrote to many patients who probably should not have been included as CEV (for example those with a history of glandular fever; or with long resolved and fully treated cancers in full remission), and also failed to include many patients who should have been classed as CEV. At the time, a survey by Pulse reported that after assessing the list of shielded patients provided by NHS England, on average practices had to remove 30 patients from the list, while adding 53 patients who had been missed off.

GP teams nationwide spent many hours scrutinising these lists, using their electronic notes, disease registers, and personal patient knowledge. The list of CEV patients needed to be as accurate as possible to try to ensure that the most vulnerable were protected, pending the arrival of covid-19 vaccines. 

The importance of the accuracy of these lists cannot be overemphasised. These patients were offered extra support from the government, and local volunteers such as regular check-up calls from social prescribers at GP practices and both the patients and their household members were prioritised for vaccines. The social and mental health impact of shielding has also been noted in practice and widely reported. When the Joint Committee on Vaccination and Immunisation (JCVI) announced the hierarchy of priority groups for vaccination, there was much debate about how high up the priority list CEV patients should be, with many surprised that they were left to be sixth in line, with priority for vaccination largely being determined by factors such as residential setting, health and social care occupation, and age.

We are now offering covid-19 vaccine boosters for many people who are over six months after their second dose. The JCVI also announced on 1 September 2021 that certain patients aged 12 and over, who were immuno-suppressed (through disease or medication) around the time of their first two doses, should be offered a third primary dose after eight weeks from their second dose. Once again, as seems to be a recurring theme throughout the pandemic, this process has been poorly announced with the media reporting it before healthcare professionals were instructed about the process; and without a clear plan for implementing the programme. 

Our most vulnerable and naturally anxious patients are confused about who should be recalling them for a third primary dose, whether or not they will be given a booster (in effect their fourth vaccine) six months later, and where to access their vaccines. Kidney Care UK for example has been deluged with enquiries from patients, many of whom have tried calling the national NHS 119 helpline to find that the staff there are often unaware of the process for arranging third primary doses. Although the JCVI wrote to specialists on 2 September 2021, it clearly takes time to review notes, run searches, and contact patients, with many patients now contacting their GP practices for support and advice. Furthermore, many of these immune-suppressed patients may receive their medication from hospital clinics, and thus might not easily show up on medication searches in their general practices. 

To add further complications, the software used (called Pinnacle) to record covid-19 vaccines is not yet able to recognise a third primary dose, so they are currently being recorded as boosters, which is technically not correct. This will make any audits of vaccine uptake in this group extremely challenging, and may cause confusion in the future. In addition, patients are reporting that their third primary doses are not displayed correctly on their NHS app, presumably for the same reason. Once again, this highlights the need for joined up thinking before rolling out plans. It is worth noting that GPs add seasonal flu vaccines on our fully electronic patient records (which are later uploaded to Pinnacle), but the covid vaccines have to be added on Pinnacle only (which is later uploaded to GP-held electronic medical records and the NHS app). This is the reverse of what we would expect and is once again an example of NHS staff being forced to adapt to IT systems rather than the IT systems being designed to support NHS staff in their day-to-day work.

The government must look at how they communicate with both the public and professionals to ensure that our ongoing covid-19 vaccination programme is fit for purpose, and maintains the trust of the public to ensure high take up and prevent vaccine hesitancy. Unfortunately, after a promising start, the UK has slipped down the covid-19 vaccination league tables, and we are becoming an international covid-19 hotspot because of our high infection rates. The covid-19 vaccination programme has allowed us to come out of lockdown, and its ongoing success will depend on public confidence and effective messaging from the centre. As we enter the winter, with many other non covid-19 seasonal infections already in circulation, it is crucial that we try to protect our most vulnerable in society by making our vaccination programme as easy as possible for patients to access and navigate.

Simon Hodes, GP Partner Watford, Twitter: @DrSimonHodes

Azeem Majeed, Professor of Primary Care and Public Health, Department of Primary Care & Public Health, Imperial College London. Twitter @Azeem_Majeed

Competing Interests: None declared. 

Acknowledgements: AM is supported by the NIHR Applied Research Collaboration NW London. 

All views expressed are the authors own. 

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The call for more face to face GP appointments have become part of the national conversation of late, so we expected GP access to be a focal point of this week’s government announcement on NHS funding—but we didn’t expect it to be the sole focus.

At the Royal College of General Practitioner’s annual conference in Liverpool this week, the frustration and disappointment among our members has been palpable.

While £250m for general practice is a significant sum of money, it’s the tip of the iceberg when you consider that this needs to be shared across over 7,000 GP practices in England. It may help get us through the winter—assuming that locums are available in areas of need—but achieve little beyond that.

Sharing some of the responsibilities for prescribing and writing fit notes is a welcome development, but falls a long way short of the system-wide programme needed to cut the box ticking and paperwork that fills up GP’s days and takes us away from frontline patient care. Reducing the burden of bureaucratic QOF on practices would have been a more positive step forward.

Earlier this summer the RCGP published our own “‘recovery plan” for halting the crisis and protecting the care of our patients and the wider NHS by investing in the hardworking GPs and their teams who provide that care. Yet our realistic and tangible solutions have been largely ignored.

Every patient should have good access to a GP, but the government’s obsession with access is a major distraction from the very real workforce and workload pressures that are preventing GPs from giving their patients the care they need and deserve.

It also fuels the rhetoric that GPs are “refusing” to see patients face to face which, as well as being inaccurate and unfair, undermines the bond of trust that GPs have with their patients.

GPs go into general practice to care for patients, and we share their frustrations when they experience long waits for GP appointments, but the claim that face to face consulting isn’t happening is wrong. Almost six in 10 consultations are currently face to face—that’s nearly 14 million in a month. The RCGP has always been very clear that a blend of remote and face to face consultations are necessary, and that post-pandemic this should be a shared decision between GP and patient. We know some patients prefer to see their GP face to face—but good care can, and is, being delivered remotely and some patients prefer it.

Regardless of how our patients access GP services, they deserve safe care and there are limits beyond which we can no longer guarantee this, especially when an individual GP is now responsible for an average of 2000 patients—this is 5% higher than just six years ago.

Yet this week has also prompted the resurgence of allegations that long waiting times for a GP consultation are caused by GPs working “part time.” But if you actually look at the hours worked by a “part-time” GP working three days a week, they are longer on average than what would be considered full time by most people—around 40 hours. A quarter of GPs are working 50 hours a week or more. To put that into context, a pilot is restricted to flying 32 hours over seven days because doing more would be considered unsafe.

GPs have worked to their limits over the last 18 months and ensured the delivery of essential care and services to patients when other parts of the NHS shut down.

Despite this, hardworking GPs continue to be vilified and scapegoated from all directions. The plans to increase more scrutiny of hard-pressed practices and the introduction of an arbitrary text message service to rate the performance of particular GP practice will further demoralise a profession that is already on its knees. Ironically, this could lead to more hardworking doctors leaving the profession before their time.

The longstanding problems in general practice—resulting from more than a decade of under investment by successive governments in the family doctor service—have only been exacerbated by the events of the past 18 months and the supply of GPs is falling far short of patient need and demand, which is rising both in volume and complexity.

While previous experience has taught us not to expect a miracle cure, this week’s so-called rescue package is yet another missed opportunity.

We need long-term, realistic, and tangible solutions to solve the crisis in general practice. This week’s announcement gave us a headline-grabbing, short-term sticking plaster that will do little to improve the morale of our beleaguered profession or the care we can deliver to our patients.

Martin Marshall, Chair of the Royal College of GPs, a GP in East London, and Professor of Healthcare Improvement at UCL. 

Competing interests: none declared.

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Historic, systemic biases in medicine have arisen from biological determinism. Cerdeña et al’s paper on race-based medicine pointed to its inherent biases that are pernicious and ongoing within clinical medicine. [10] Proponents of critical race theory argue that race is a social and political construct where “bodies inherit not merely genes, but power relationships, legacies of discrimination, the ideological effects of past social policy, and generational systems of belief.” [11] Nevertheless, intersectional oppressions can lead to the epigenetic phenomena of weathering where hardships can produce disease pathology. [12] Thus, making recommendations based on race alone must be critically evaluated and never undertaken in isolation.

We are deeply concerned that if these recommendations are taken forward uncritically, they could further embed institutional racism in maternity care, strengthen racial biases and stereotypes, legitimise skin tone as clinically meaningful, pathologize healthy pregnancies in women from ethnic minority backgrounds, and undermine choice for black and brown women. 

We want to draw attention to the concept of Cultural Safety in which structural reflexivity is more important than reflectivity [13]. “Reflectivity” involves analysing what has happened. However, “reflexivity” involves self or institutional assessment, evaluation of power imbalances, and reaction to the circumstances as they are happening. Its purpose is to look inwardly and outwardly in a social context. This would lead to critically appraising the evidence base for structural/institutional racism; to acknowledge race as a social construct and racism as a determinant of health; and recognition of the lived experiences of women from ethnic minorities and birthing people within healthcare systems, and co-production as essential in generating guidelines. 

In the NICE evidence review for the draft guidelines the lack of direct evidence for women from ethnic minorities is noted by NICE. Of the studies referenced the vast majority did not record race or were unable to, or failed to, report on ethnic variation due to low numbers of minority ethnic women. [14] This “absence” of evidence could be construed as a form of structural racism.

Attention has been drawn to older studies from routine data sets that suggest different gestation lengths for women from ethnic minorities in comparison to white women. [15-17] In critically appraising this further, these routine data are of a lower quality and not from controlled trials. Studies from older routine health data can fall prey to bias, and indeed mask or conceal structural discrimination and racism, and should only be used as a signal for launching better studies. Indeed an examination of a data set of birth outcomes for African and Caribbean babies in England and Wales makes a case against over homogenisation of women from ethnic minorities. [18] 

In a statement from the RCOG about NICE’s draft guidance the college imply that induction has no downsides, but they don’t seem to have taken into account the recent long term adverse outcomes data for inductions of labour in uncomplicated pregnancies from Australia, or the increasing evidence that the risk of stillbirth is reduced by amplifying continuity of midwifery care models. [19-22] 

Achieving high quality national guidance also requires an examination of the impact of social, cultural, and political systems on health, wellbeing, safety, access to care, quality of care, and autonomy. Structural racism is pervasive across British society. Racism is a known determinant of health, occurring at systemic and individual levels. Its role in perpetuating the extreme disparities witnessed in maternity care needs to be addressed through “race conscious medicine” as described by Cerdeña et al. [10] 

Experiential data can enhance critical analysis by positively challenging biases and reductive stereotyping and exposing racism that quantitative data may conceal. There are widespread qualitative data which show that women in all ethnic minority groups have poorer experiences of care across antenatal, intrapartum, and postnatal stages than white women. [23] Bringing together experiential knowledge and priorities with clinical knowledge and priorities in co-production processes would increase not only the quality of guidance, but increase confidence in it, and help achieve individualised care for all women, and reduce coercion. While NICE have been emphatic that guidelines should not be tramlines, efforts to address the lack of birthing women’s autonomy in induction of labour requires significantly more attention. [24,25]

The conversations around the NICE draft guidelines provide strong justification for structural reflexivity, “race conscious” medicine, and co-production. [10,13] The opportunities for real change should not be overlooked. If indeed future higher quality studies reveal different gestation lengths for women and birthing people from ethnic minorities, there should be no delay in presenting these data to stakeholders. 

Christine Douglass patient/public advocate with background in social accountability in medical education

Amali Lokugamage consultant obstetrician and gynaecologist and honorary associate professor

Competing interests: CD is chair of the BMA Patient Liaison Group. AUL is on the Board of Directors of the International MotherBaby Childbirth organisation and is also a member of the Patient and Public Voice Partners for NHS England, in both cases deriving no financial remuneration. AUL is a company director of a small publishing company called Docamali Ltd. 

Acknowledgement: we are grateful to Logan Van Lessen for reviewing the manuscript and alerting us to the importance of continuity of midwifery care models.  

References:

1 Knight M, Bunch K, Tuffnell D, et al. MBRRACE-UK. Saving lives, improving mothers’ care – lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2015-17. Oxford: National Perinatal Epidemiology Unit, University of Oxford: 2019. https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/MBRRACE-UK Maternal Report 2019 – WEB VERSION.pdf

2 Knight M, Bunch K, Tuffnell D, et al. MBRRACE-UK. Saving Lives, Improving Mothers’ Care – Lessons Learned to Inform Maternity Care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2014-16. Oxford: National Perinatal Epidemiology Unit, University of Oxford: 2018. https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/MBRRACE-UK Maternal Report 2018 – Web Version.pdf

3 Draper E, Gallimore I, Smith L, et al. MBRRACE-UK Perinatal Mortality Surveillance Report, UK Perinatal Deaths for Births from January to December 2018. Leicester:The Infant Mortality and Morbidity Studies, Department of Health Sciences, University of Leicester: 2020. https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/perinatal-surveillance-report-2018/MBRRACE-UK_Perinatal_Surveillance_Report_2018_-_final_v3.pdf

4 RCOG. International Women’s Day 2020: We need to talk about race. 2020.https://www.rcog.org.uk/en/news/campaigns-and-opinions/international-womens-day/international-womens-day-2020/

5 RCOG. RCOG and Five X More launch joint campaign to tackle racial disparities in maternity care. 2020.https://www.rcog.org.uk/en/news/rcog-and-five-x-more-launch-joint-campaign-to-tackle-racial-disparities-in-maternity-care/

6 NICE. NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE. Guideline. Inducing labour. Draft for consultation. May 2021. https://www.nice.org.uk/guidance/GID-NG10082/documents/draft-guideline-2

7 OBS. The #notsonice campaign. Published Online First: 2020.https://the-obs.co.uk/notsonice/

8 Birthrights. Induction proposals ignore black and brown women’s experience of maternity services. 2020.https://www.birthrights.org.uk/2021/07/05/induction-proposals-ignore-black-and-brown-womens-experience-of-maternity-services-says-birthrights/

9 Mahase E. Doctors question NICE recommendation to induce labour at 39 weeks in ethnic minority women. BMJ 2021;374. doi:10.1136/bmj.n1711

10 Cerdeña JP, Plaisime M V, Tsai J. From race-based to race-conscious medicine: how anti-racist uprisings call us to act. Lancet 2020;396:1125–8. doi:10.1016/S0140-6736(20)32076-6

11 Bridges KM, Keel T, Obasogie OK. Introduction: Critical race theory and the health sciences. Am J Law Med 2017;43:179–82. doi:10.1177/0098858817723657

12 Simons R, Lei M, Beach S, et al. Economic hardship and biological weathering: The epigenetics of aging in a U.S. sample of black women. Soc Sci Med 2016;150:192–200. doi:10.1016/j.socscimed.2015.12.001. Epub 2015 Dec 10. PMID: 26765221; PMCID: PMC4733569.

13 Lokugamage AU, Rix E, Fleming T, et al. Translating Cultural Safety to the UK. J Med Ethics 2021;:medethics-2020-107017. doi:10.1136/medethics-2020-107017

14 NICE. Inducing labour [C] Induction of labour for prevention of prolonged pregnancy. NICE guideline number CG70 (update) Evidence review underpinning recommendations. 2021. https://www.nice.org.uk/guidance/gid-ng10082/documents/evidence-review-3

15 Picart S, Frimpong T. Response to the recent draft NICE guideline on induction of labour (part 1) with my friend and fellow obstetrician Tejumola Frimpong. Faceb. Post. 2021;July.https://www.facebook.com/stacey.ferguson.3910/videos/361521055548639

16 Balchin I, Whittaker J, Lamont R, et al. Timing of planned cesarean delivery by racial group. . Obs Gynecol 2008;111:659–66. doi:10.1097/AOG.0b013e318163cd55

17 Balchin I, Whittaker JC, Patel RR, et al. Racial variation in the association between gestational age and perinatal mortality: prospective study. BMJ 2007;334:833. doi:10.1136/bmj.39132.482025.80

18 Datta-Nemdharry P, Dattani N, Macfarlane AJ. Birth outcomes for African and Caribbean babies in England and Wales: retrospective analysis of routinely collected data. BMJ Open 2012;2:e001088. doi:10.1136/bmjopen-2012-001088

19 RCOG. RCOG responds to NICE draft guidelines on induced labour. July 13. 2021.https://www.rcog.org.uk/en/news/rcog-responds-to-nice-draft-guidelines-on-induced-labour/

20 Dahlen HG, Thornton C, Downe S, et al. Intrapartum interventions and outcomes for women and children following induction of labour at term in uncomplicated pregnancies: a 16-year population-based linked data study. BMJ Open 2021;11:e047040. doi:10.1136/bmjopen-2020-047040

21 NHS. Targeted and enhanced midwifery-led continuity of carer. https://www.england.nhs.uk/ltphimenu/maternity/targeted-and-enhanced-midwifery-led-continuity-of-carer/

22 Sandall J. Measuring Continuity of Carer: A monitoring and evaluation framework. 2018. https://www.rcm.org.uk/media/2465/measuring-continuity-of-carer-a-monitoring-and-evaluation-framework.pdf

23 Henderson J, Gao H, Redshaw M. Experiencing maternity care: the care received and perceptions of women from different ethnic groups. BMC Pregnancy Childbirth 2013;13:196. doi:10.1186/1471-2393-13-196

24 David Haslam: Getting the guidance right. NICE. 2016.https://www.nice.org.uk/news/feature/david-haslam-getting-the-guidance-right

25 Skyrme L. Induction of labour for post-term pregnancy. Br J Midwifery 2014;22. doi:10.12968/bjom.2014.22.6.400

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“The cancer might be stage 1b. Then again it could be 3b.” 

“Let’s check Google again.” 

This was the patter of daily, and nightly, conversations between my partner, H, and myself over a two-week period. Diagnosed with stomach cancer, H could recall scarcely anything the oncologist said. To fill in the knowledge gaps, we did what every doctor advises against—we turned to Dr Google. H also requested copies of his medical records—several times. As we waited, worried, and felt confused, the internet offered no concrete answers, but it did help us claw back some semblance of control. At least now we had information on the treatments and prognoses for stomach cancer—even if we didn’t yet know the details of H’s case.      

Not everyone with a cancer diagnosis experiences the frustration of not being able to look at their medical notes and think through the implications of the information documented there. In the USA and Nordic countries, patients are offered real-time, online access to their clinical records—including lab and test results and their doctors’ notes (“open notes”). Recently, much attention has focused on the implications for patients and clinicians of this practice innovation. But another conversation has been overlooked. Denying patients’ online access to their medical information carries consequences too. We need to talk more about “closed notes.” 

Legally, patients in many countries have the right to request copies of their medical records. However, as my partner and I experienced, the process is cumbersome, time-consuming, and socially awkward. At a time when he should have been thinking only of himself, H was worried that his doctor would think negatively of him for daring to seek more information about his condition. Emails to his busy doctor went unanswered, and this added to his nervousness. Closed notes unquestionably heightened his anxiety, and intensified confusion about the future. H recognized his doctor was overstretched, but felt worthless and frustrated when nobody had time to reply. By obtaining information about our sensitive internet searches about stomach cancer, Google seemed to be the only winner in this scenario.       

H’s experiences are not unique. Patients misremember around half of what their doctor tells them, and recall is worse when patients are in shock. Studies show that “scanxiety”—the distress felt by patients waiting for test and scan results—is real, and dissipates when patients get their results. Among patients who lack ready access to their results and clinical notes on how to interpret them, the wait is protracted and stressful. In the current system, however, doctors don’t tend to focus on the adverse effects on patients of “closed notes.” Perhaps this is because it is the current convention in most parts of the world. And patients seldom complain, as most are resigned to a lack of access to personal health information and test results because it’s long been “how things are done.” 

Reflecting on this customary practice invites important ethical questions. Closed notes are reliant on single-shot, miss-it-and-you-miss-out disclosure of information by doctors to their patients. While most are now copied into clinical letters sent to their primary care doctors, not all are and there is no onus on doctors to write notes which are easily understood by patients. How does this affect patient empowerment, wellbeing, or patient-doctor trust? What is the impact in terms of patient harm? And what do closed notes do for justice in healthcare delivery?  

H was in a relatively privileged position. But despite being well-educated and fluent in English, he still struggled to remember everything his doctor said. Among patients from other demographic groups—minorities, people with low-incomes, older people, those suffering from multiple chronic conditions, or patients who don’t speak the same language as their doctor—poor communication and misunderstanding is even more likely. Patients from lower socio-economic groups, and those from racial or ethnic minorities, may experience anxieties related to perceived or anticipated prejudice potentially further compromising engagement and medical dialogue. Older patients may suffer from impaired memory making it harder to recall recommendations and next steps. People with multiple chronic illnesses may simply have too much information to remember. Patients whose first language differs from their doctor’s are also at higher risk of misunderstanding their diagnosis and treatment, resulting in treatment non-adherence and adverse reactions to medications. 

Open notes are the solution to important problems that have been overlooked and downplayed by health professionals. Affording patients digital access to their own health information allows them to extend their engagement with the information provided at the clinic visit, and supplement the communication pitfalls of time-constrained face-to-face or virtual appointments.      

In multiple studies, the majority of patients with experience of open notes report that reading their notes is very important for feeling in control of their care, remembering their care plan, and understanding why medications are prescribed. Patients report trusting their provider more, greater goal alignment, and teamwork. These benefits are reported most often among patients who are older, non-white, those with fewer years of formal education, or do not speak English at home. Older and chronically ill patients, in particular, appreciate the opportunity to share their notes with family and friend caregivers.

Three years after his initial diagnosis, H still cannot access his test and clinic visit notes online. Every oncology check-up is an anxious experience made worse by inability to read his medical information. Closed notes are an inherited structure in healthcare, but this doesn’t make them right. Or in the memorable words of one patient, “If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it.” 

Charlotte Blease is a philosopher of medicine and interdisciplinary health researcher, and Keane Visiting Scientist at General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts. Twitter: @crblease

Competing interests: none declared.

Patient consent obtained. 

The post Charlotte Blease: We need to talk about “closed notes” appeared first on The BMJ.

“Now is the start of the chronic phase.” This comment from a friend shortly after our baby son’s funeral grabbed my attention. As an anaesthetist, I appreciate the instant drug to effect gratification of anaesthesia for half of my working week. Yet pain medicine is my niche—specifically, the chronic, awkward pain that refuses to go away.

My clinic is filled with people who suffer in ways that are inconvenient to conventional medicine. They experience disparate pains that will not be boxed neatly inside a unifying diagnosis. Pain that comes with the kind of baggage it makes any attempts to cling to tidy Cartesian dualism seem delusional. I hope that my interactions with people facing such circumstances have been empathetic before now, although only they can judge. Faced with the chronic pain of grief for a child, I feel a new kinship with them.

Pain and grief are ugly things. We do not want them around because they make us afraid. We like to be in control, and loss and pain remind us that we never were. They blow apart our modern fantasy that successful living resides entirely in comfort and happiness. When this facade is shattered, difficult existential questions arise. These struggles and the questions they force upon us are most obvious among the dying: what does life mean in light of imminent death? What constitutes a “good” death, or a good life? How much will it hurt? 

In chronic pain, the questions have a different flavour—one which more closely resembles the experience of those left behind, the bereaved ones. How do I continue to live this life I would never have chosen for myself? It really does hurt. Is it possible to make peace with a pain that has no obvious endpoint?

I have heard people in persistent pain express the desire to be able to put down their pain, or let someone else shoulder the burden, if only for a while. How I wish that were possible with grief. Both experiences are isolating. The desire to reach out to others for comfort is matched by overwhelming loneliness. At times, it feels like no one can reach me.  

There are flare ups with grief, as with chronic pain. Some are predictable—a due date, an anniversary, an occasion that should be happy but now is not. These clouds gather visibly on the horizon—at least offering the opportunity to take shelter, to try to mitigate the blow. At other times they come out of a clear blue sky. We carry the weight around with us every day. On some days we are more equal to it than on others.

Hearing other people’s stories can be helpful. But as time passes, I am aware that there is a choice to make. It can be tempting to nurse grief, or pain, in an attempt to retain a connection with what has been lost. An identity can be found there, but it is one that is defined by loss. The journey from there to disabling bitterness is a short one. Instead, can I choose to integrate the loss into the larger story of my life, and to build more layers of experience around it, which may insulate it a little in time? 

Our culture does not deal well with pain. We are privileged to live in a society where diverse worldviews and faiths can be held freely. Yet we discuss them so rarely, when all is well in our private world, that in moments of shattering loss there is a risk that the fragile illusion of unity will break. We experienced, for example, the acute discomfort of those caring for our son when confronted with our faith. As a consequence, we have no social protocol for serious illness or death, and no shared paradigm. A Kurdish friend, on visiting us shortly after our son’s death, commented on the discomfort he felt on his first encounter with such a situation in British culture. We congratulated him on having become thoroughly enculturated—it’s always awkward, no one ever knows what to say. We simply appreciated the fact that he came. 

At work I have often felt the discomfort of having little to add, no new wonder drug or procedure to guarantee a pain-free future for the person in front of me. Medical training conditions us to end each encounter with a plan—to categorise, then to manage. Over time I have learnt to sit on my hands, to acknowledge the discomfort but to keep my mouth shut and listen. I have long believed that this approach has value in its own right. As grieving parents we have encountered those who are too eager to “fix” us, albeit with the best of intentions and from a desire to make things better. In truth, there is no cure. I appreciate the people who continue to show up, and who are prepared to sit with us through the confusion and anger and sadness. 

I truly admire the people I meet in clinic, who make the choice, most days at least, to accept their altered life and to find meaning in it in spite of the pain. These people keep on shouldering their particular burden, but refuse to be defined by it. I hope I can continue to learn from them.

Ruth Moore is an anaesthetist in the UK. 

Competing interests: I have no financial interests, but in addition to my NHS appointment I am a volunteer doctor with Freedom From Torture.

The post Life lessons from the pain clinic appeared first on The BMJ.

Sigall Bell, associate professor of medicine, Harvard Medical School; Fabienne Bourgeois, assistant professor of pediatrics, Harvard Medical School; Stephen Liu, associate professor of medicine, Geisel School of Medicine at Dartmouth; and Eric Thomas, professor of medicine, McGovern Medical School at the University of Texas Health Science Center at Houston on behalf of the OurDX development team* 

Diagnostic error is common, costly, and distressing for patients and healthcare professionals alike.¹ Breakdowns in communication can arise when consultations are time pressured or fragmented, resulting in challenges to listening, interpreting, and acting on patients’ symptoms, signs, and test results. Most clinicians want to know about process breakdowns and “near misses” that could lead to diagnostic error, but few receive this feedback, resulting in missed opportunities for improvement.² 

Evidence suggests that engaging patients in the diagnostic process is critical to prevent diagnostic error.¹ Over the last decade, we’ve learnt that sharing visit notes electronically with patients and families (referred to as “open notes”) helps them remember diagnostic tests and referrals, strengthen relationships with providers, and identify breakdowns in the diagnostic process.^3-5 Based on this experience, we decided to develop a new tool, OurDX, to more actively co-produce the diagnostic process with patients and families.      

Using data from diagnostic breakdowns to develop OurDX

We started by convening a 14-member multistakeholder group including patients and families, diagnostic error and patient engagement experts, clinicians, and healthcare delivery researchers. Participating patients and families included individuals from diverse racial backgrounds, and who had lived experience with chronic illness, complex care, or disability. The group’s work focused on establishing a patient-centred framework to understand and describe diagnostic breakdowns experienced by patients and families.⁶ We defined a patient-reported diagnostic process-related breakdown as a problem or delay identified by patients that mapped to any step of the diagnostic process, as outlined in the NAM conceptual model.¹ Three researchers (one internal medicine doctor [SB], one paediatrician [FB], and one patient [LS]) then applied the framework to analyse—using standard qualitative methods—over 2000 patient-reported ambulatory errors in two existing datasets: a national Institute for Healthcare Improvement (IHI) survey on the American public perception of medical errors,⁷ and a survey of patients using open notes at three health organisations in the United States.⁸

This study showed that the main patient-identified problems which can lead to diagnostic breakdowns include: 1) failure to accurately capture and record patients’ history; 2) inadequate communication, including patients not feeling heard or misalignment between patients’ and providers’ views about what’s important; 3) failure or delays related to the explanation of symptoms or next steps; and 4) test or referral breakdowns, such as missing orders for recommended tests, scheduling delays, or problems with interpretation and communication of results.⁶ 

On the basis of this analysis, a workgroup—including patients and family members who receive care at several different organisations, physicians, a user-centred design expert, and representatives from the office of patient experience—began designing OurDX to help tackle these problems. OurDX builds on using the electronic health record (EHR) as a common shared vehicle for full exchange of information between patients and clinicians.  In addition to encouraging patients to read notes, it provides a dedicated space in the EHR for patients to set out their priorities for the clinic visit, document their symptoms and concerns, and include any information they have about potential breakdowns related to the diagnostic process. Patients’ contributions become part of the EHR, and clinicians can include their comments in the notes they write after the consultation, potentially decreasing documentation burden. OurDX builds on “Open Notes,”⁹ “Our Notes”¹⁰ (which invites patient contributions to note), and IHI’s “What Matters To You,” by creating an engagement cycle before and after the visit that is focused on the diagnostic process [Fig 1].        

During our planning discussions with patients and families, we learnt about the physical and emotional impacts of diagnostic error and the absence of an effective way to provide feedback to clinicians about diagnostic breakdowns in real time. Patients expressed gratitude for access to their health information and for the opportunity to help healthcare providers “get it right.” They also prioritised using a positive frame for OurDx that is relationship-centred.  

Design of OurDX to reflect patient and clinician priorities 

Clinicians worried that OurDX content might create additional burdens in time constrained visits. But evidence demonstrates the value of patient contributions to raise awareness about clinically relevant diagnostic breakdowns, some of which may otherwise be invisible to clinicians.⁴ Bearing these factors in mind, we designed questions to focus on actionable information related to the current visit. In addition to open ended items, we used checkboxes for patients to indicate if they had recent visits to an emergency department or another healthcare system for the same problem, or other factors that could help clinicians quickly flag visits that are at higher risk for a diagnostic breakdown. We designed OurDX with a collaborative spirit—inviting patients to help clinicians get it right—and included a positive feedback question to also identify things that are going well. Finally, we underscored provider feedback about workload and relevance in our assessment.

We developed educational materials and tested OurDX with members of the patient and family advisory council, seeking additional feedback from one hospital’s quality improvement group and the clinics at both hospitals where the tool was planned for implementation. We discussed the system with participating providers and described how to find patient responses to OurDX in the EHR, and how to import them into progress notes. Then we set up a system in which patients receive an invitation from the clinic to complete the OurDX tool electronically several days before their scheduled visit through the patient portal or by email. We implemented OurDX in 2021 in five clinics, including both primary care and specialty care at Boston Children’s Hospital and Dartmouth Hitchcock Medical Center. No new technology has been required since most standard EHRs have built-in functionality for a pre-visit survey.

Betsy Lowe, volunteer patient/family adviser with multiple chronic conditions and 11 years of experience at Beth Israel Deaconess Medical Center in Boston, MA   

As a mother of three children, I interact regularly with doctors, nurses, and physician assistants, and feel responsible for the health and wellbeing of our family in ways that are visible and invisible to providers. For our family, the process of reaching a diagnosis has on occasions been a complicated, confusing, and emotionally exhausting journey. But this experience is rarely discussed in clinic visits, nor is it documented in our notes—even though it becomes a core piece of who we are, how we move through the world, and how we interact with healthcare professionals. It also affects how we live with our diagnoses, our trust in our providers, and our willingness to engage in treatment. I have often wondered how and when to share these parts of our story.      

My work on OurDX included participation in the development of the patient-centred framework for diagnostic breakdowns and the Our DX tool. The experience was rewarding because it gave me insight into the problems providers face on a daily basis, trying to balance the strong desire to care for patients with constrained resources and time. Imagining how I would respond to the OurDX questions before a visit for myself or my children helped me see how inviting patient and family contributions before the visit might encourage open and honest discussion about what it is like for us to go through a challenging diagnostic process. Listening to clinicians and patients on the team enabled me to understand how easily some important pieces of the patient’s story or clinical history can be unintentionally overlooked or mistaken, and how these problems can affect diagnosis or treatment.      

I continue to wonder how and when patients like me can and should share more of our story and how organisations can seek systematic feedback on our experiences. Access to electronic medical records has been valuable because I have gained a better understanding of how clinicians think, and I use my record to orient myself ahead of my next visit. I believe that all healthcare organisations need to find creative ways to invite patients and families to share more about their journey, in order to improve care.

Liz Salmi, patient-researcher and person living with cancer

The first time I read my medical record was eight years after my brain cancer diagnosis. Viewing my record was eye opening: it answered my questions, reminded me of my care plan, and reinforced that my doctors were truly listening to me. After enduring two brain surgeries and two years of chemotherapy, I wish I could have seen my record sooner.

When my insurance changed, I switched doctors and requested my records. I was surprised by the $725.40 fee, which I’ve learnt was a not uncommon barrier to patient record access before the 21st Century Cures Act, which mandates patient access to their electronic records in the US.^{11 12} I noticed some mistakes in my chart: my age at diagnosis was listed as 19 instead of 29, and my brain cancer type was incorrect.     

I’m not the only person to spot inaccuracies in my medical record. Research shows that one in five people who read their notes find errors, many of which they consider important.⁴ However, the process for patients to report errors is complicated, varies by organisation, or simply does not exist. A tool like OurDX could help me alert my doctor to the errors in my record. It also sends patients the message that our input is valued and welcomed.

As a patient-researcher, I participated as a patient-coder in the qualitative analysis of patient reports of medical error, informing OurDX design. The most surprising thing I discovered from reading these patient accounts is how my view of “diagnosis” changed. I used to think of diagnosis as a “thing I have”—an unchanging attribute. “She is left-handed, she has recurrent grade II astrocytoma.” I now understand diagnosis is not just a thing, but also a process.      

Preliminary findings and future directions

Sigall Bell, Fabienne Bourgeois, Stephen Liu, and Eric Thomas

So far, the number of patient responses to OurDX is over 3000, which has exceeded our expectations. A few patients have declined use of OurDX due to pandemic-related survey fatigue. As anticipated, the number of patient-reported breakdowns has been relatively small,⁶ and we have found that giving patients the opportunity to write about their experience and views has resulted in patients sharing positive feedback as well. Some clinicians report that receiving agenda items and patient-reported histories before or at the visit helps organise the visit, engage patients, and accelerate diagnosis in some instances. For example, patient-provided descriptions of current symptoms have prompted diagnostic studies such as lab tests or imaging to be arranged before the visit, so that results are available sooner. Early concerns about time to read OurDX or pressure to address clinically unimportant concerns have not emerged as major issues, and may be offset by greater clinician efficiency in gathering information and patients who are more prepared for visits. Early data suggest OurDX may decrease documentation burden by shortening provider-generated patient histories in notes with OurDX patient contributions. 

Co-developing OurDX with patients and families has helped us to learn more about how to engage patients in the ambulatory diagnostic process, which is challenging since it may involve multiple clinic visits and interactions with several different doctors. Formal evaluations of patient reports and clinician surveys are underway and we have translated the tool into Spanish. We believe OurDX can better align patient priorities with clinician agendas, ensure the patient story is captured correctly, facilitate timely completion of diagnostic tests or referrals, and help patients feel heard—underscoring their vital role in the diagnostic process. 

Key messages:

• Recent advances in technology, transparency, and policy open the door to new ways of engaging with patients and families, such as co-producing and sharing visit notes.
• Patients and families have unique knowledge and experience of their symptoms and events that transpire between healthcare visits, and can help complete a 360-degree view of the diagnostic process, enabling more timely and accurate diagnoses. 
• Engaging patients and families in diagnosis with tools like OurDX provides opportunities to enrich patient/family understanding of, and contributions to, the diagnostic process; deepen clinician understanding of the patient/family’s journey; and improve the quality and safety of care. 

Figure 1: The OurDX patient engagement cycle before and after the visit

*OurDX development team: Sigall Bell, Fabienne Bourgeois, Michele Domey, Stephen Liu, Elizabeth Lowe, Aniqa Mian, Sandy Novack, James Ralston, Lisa Rubino, Liz Salmi, Eric Thomas

Sigall K Bell is associate professor of medicine at Harvard Medical School and director of patient safety and discovery at OpenNotes, Beth Israel Deaconess Medical Center, Boston, MA.

Fabienne Bourgeois is assistant professor of pediatrics, Harvard Medical School and associate chief medical information officer at Boston Children’s Hospital, Boston, MA.

Stephen Liu is associate professor of medicine at the Geisel School of Medicine at Dartmouth, Hanover, NH.

Eric J Thomas is professor of medicine at the McGovern Medical School at the University of Texas Health Science Center at Houston (UTHealth), and director of the UT Houston-Memorial Hermann Center for Healthcare Quality and Safety and associate dean for healthcare quality, in Houston, TX. 

Elizabeth Lowe is a patient advocate and member of the patient and family advisory council at Beth Israel Deaconess Medical Center, Boston, MA.

Liz Salmi is a patient-researcher, person living with cancer, and senior strategist at OpenNotes, Beth Israel Deaconess Medical Center, Boston, MA.

Statement: The authors have read and understood BMJ policy on declaration of interests and declare the following interests: This work was supported by funding from the Agency for Healthcare Research and Quality (SB, FB, SL, ET, LS). SB and FB also report funding from the Society to Improve Diagnosis in Medicine for developing OurDX for Spanish-preferring patients.

Acknowledgement: The authors thank the patients and families who participated in surveys and feedback informing this work; Amanda Norris for her design of the OurDX figure; Nicolas Hart and Brianna Mahon for their assistance in implementing OurDX; Kendall Harcourt for her assistance in project management; Jan Walker and the OurNotes team for contributions from the OurNotes effort; members of the multistakeholder advisory group that guided development of the Patient-Centered Framework, including: Feleshia Battles-Byrdsong, Cait DesRoches, Patricia McGaffigan, Lauge Sokol-Hessner, Suzanne Schrandt, Sue Sheridan, and Glenda Thomas; and additional patient advocates and patient experience contributors to the OurDX development team, including Michele Domey, Aniqa Mian, Sandy Novack, James Ralston, Lisa Rubino, and Sara Toomey.

References

[1] Balogh EP, Miller BT, Ball JR, et al. Improving Diagnosis in Health Care; 2015. Available at: https://www.nap.edu/read/21794/chapter/1

[2] Croskerry P. The Feedback Sanction. Acad Emerg Med. 2000;7(11):1232-1238. doi:10.1111/j.1553-2712.2000.tb00468.

[3] Bell SK, Folcarelli P, Fossa A, et al. Tackling Ambulatory Safety Risks Through Patient Engagement, Journal of Patient Safety: April 27, 2018 – doi: 10.1097/PTS.0000000000000494. 

[4] Bell SK, Delbanco T, Elmore JG, et al. Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes. JAMA Netw Open. 2020;3(6):e205867-e205867. doi:10.1001/jamanetworkopen.2020.5867

[5] Blease CR and Bell SK. Patients as diagnostic collaborators: sharing visit notes to promote accuracy and safety. Diagnosis (Berl). 2019 Aug 27;6(3):213-221. doi: 10.1515/dx-2018-0106.

[6] Bell SK, Bourgeois F, DesRoches C, et al. Filling a Gap in Safety Metrics: Development of a Patient-Centered Framework to Identify and Categorize Patient-Reported Breakdowns related to the Diagnostic Process in Ambulatory Care. BMJ Qual Saf in press.

[7] Americans’ experiences with medical errors and views on patient safety.  Final report. Available at: http://www.ihi.org/about/news/Documents/IHI_NPSF_NORC_Patient_Safety_Survey_2017_Final_Report.pdf

[8] Walker J, Leveille S, Bell SK, et al. OpenNotes After 7 Years: Patient experiences with ongoing access to their clinicians’ outpatient visit notes. J Med Internet Res 2019;21(5):e13876

[9] Delbanco T, Walker J, Bell SK, et al . Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med 2012; 157:461-470

[10] Mafi JN, Gerard M, Chimowitz H,et al. Patients Contributing to Their Doctors’ Notes: Insights From Expert Interviews. Ann Intern Med 2017; DOI: 10.7326/M17-0583

[11] Salmi L, Blease CL, Hagglund M, et al. US Policy requires immediate release of records to patients. BMJ 2021;372:n426

[12] Lye CT, Forman HP, Gao R, et al. Assessment of US Hospital Compliance With Regulations for Patients’ Requests for Medical Records. JAMA Netw Open 2018;1(6):e183014. doi:10.1001/jamanetworkopen.2018.3014

The post Co-development of OurDX—an online tool to facilitate patient and family engagement in the diagnostic process appeared first on The BMJ.

The UK population is among the most willing to receive a covid-19 vaccine; as of 11 October 2021, over 49 million individuals (85.6% of people aged 16 and over) had received at least one dose of a covid-19 vaccine. [6,7] However, the covid-19 vaccination programme—the largest ever launched by the NHS—is reaching a “demand” ceiling in adolescents and young adults, finding itself well behind other Western European countries, and hampering efforts to achieve population level immunity. If vaccination uptake is also slow in 12-15 years old children, this will further hinder efforts to reach population immunity.

Vaccination rates in younger people are lower and increasing more slowly than was seen in older age groups when they were first offered vaccination. [1,8] According to the Office for National Statistics, 14% of those aged 16-17 years, 10% of those aged between 22-25 years, and 9% of those aged between 18-21 years consider themselves “hesitant” compared to 4% observed across all other age groups. [5] This mirrors concerning findings from the USA which demonstrate that one in four of those aged between 18 and 25 “probably will not” or “definitely will not” receive a covid-19 vaccine, despite their heightened infection risk in recent months. [9] Given their increased tendency to socialise, strategies that improve vaccine acceptance in adolescents and young adults remain essential to control the pandemic globally as well as in the UK. [10] 

Historically, vaccine hesitancy exists on a spectrum and is listed by the WHO as one of the top 10 global health threats. [11] The groups that are among the currently most affected by the virus are also the ones with the lowest vaccination rates. [12] With ideal conditions for SARS-CoV-2 to spread, the risk of emergence of “super variants” that could potentially escape vaccines and jeopardise the health of the most vulnerable in society remains a risk. Vaccine hesitancy in young people in the UK may be further increased by the delay in approving vaccination for 12–15 year-olds, with the UK starting vaccination later than many other European and North American countries. The message from the UK’s Joint Committee on Vaccination and Immunisation (JCVI) that covid-19 vaccination in this group offers only “marginal benefits” will also have contributed to this, with many parents and children questioning why they should be vaccinated if this is the case. [13] The benefits and potential risk from vaccination will therefore need to be discussed carefully with children and their parents to dispel any unwarranted negative views. [14] 

This has been successfully done in Portugal; despite Portuguese parents not being safe from vaccine misinformation and disinformation, the country has managed to emerge as the world’s vaccination front-runner, with 86% of its population vaccinated (98% of whom are aged 12 years and over). [15] Its successful vaccine rollout is, in part, attributed to the country’s comprehensive monitoring system;vaccine compliance is monitored nationally by healthcare facilities, schools, daycare centres, summer camps, and other child institutions, allowing the country to develop and tailor educational information to hesitant parents or parents known to have refused a vaccine in the past. [16] This has generated favourable conditions for paediatric immunisation across the country.

Concerns about side effects are an important factor in vaccine hesitancy in children, adolescents, and young adults, particularly the risk of condition such as myocarditis. [9] Although rare, the myocarditis and pericarditis reports in adolescents and young adults, following the administration of Pfizer-BioNTech and Moderna vaccines, will have amplified fears of vaccines in this group. [17] However, the risk of developing complications, such as blood clots and myocarditis, from covid-19 illness remains greater than the risk from vaccines. [18] Genuine concerns about the side effects of vaccines should be addressed by academics and clinicians proactively listening to young people, and sharing risks and benefits in a manner that aligns intention with action. [19] It is also essential that moving forwards, the UK’s covid-19 vaccination programme is embedded in primary care to create a cost-effective, sustainable infrastructure for vaccine delivery; and to avoid making the many mistakes that were made in other parts of the covid-19 response, such as Test and Trace and the Nightingale Hospitals. [20] 

To offset optimistic bias, including adolescents and young adults perceiving the risk of disease being lower than the risk of receiving a covid-19 vaccine, communication should speak to mechanism of action, effectiveness, and safety relevant to these age groups and the wider societal benefits of vaccination in protecting their older family members, and vulnerable friends and colleagues. [10,21] Further, public health messaging will be more effective if the benefits of controlling the pandemic, including freedom to attend festivals, sporting events and entertainment venues, as well as the ability to travel are reinforced. Targeted health messaging and public education campaigns will also require harnessing social media, schools and universities to counter the covid-19 infodemic. [10] To increase vaccination rates, messages should be tailored for families financially burdened by the pandemic, families with lower parental education and incomes, and adolescents and young adults with adverse childhood experiences. [10] 

While the risk of severe disease and death from covid-19 is lower in young people, high infection rates and low vaccination rates mean this group remains vulnerable to long covid and its debilitating symptoms, regardless of the symptoms shown during their covid-19 infection. [9] With the majority of covid-19 deaths occurring in those aged 75 years and over throughout the pandemic, a youthful sense of invincibility will be an important barrier to overcome; young adults need to be mindful that although their symptoms may not be as severe, 57%, 39% and 30% of individuals have stated that long covid has negatively impacted their wellbeing, ability to exercise and ability to work, respectively. [22,23] Recent evidence suggests more people expressed fear and concern about the risk to health of those close to them. [24] Therefore, emphasising the protection that vaccines offer to those particularly vulnerable will likely have a positive effect on adolescents and young adults and their parents. 

The pandemic is a “collective action problem,” requiring personal responsibility and responsible communication by governments and public health authorities that break through optimistic bias without prompting feelings of anxiety. The UK’s mixed messages on mitigation measures including face masks and working from home are likely to provide a false sense of security that discourages vaccination uptake at a time when infection rates remain much higher in the UK than other European countries. The race between vaccinations and mutations requires consistent, clear, and data-based messages that dispel misinformation, and promote informed decision-making, civic awareness, voluntary cooperation and a sense of collective purpose. This will improve vaccine uptake in all sections of the population, including children, adolescents, and young adults, at a key time when vaccination is being extended in many countries to younger age groups.

Tasnime Osama, Honorary Clinical Research Fellow in Primary Care and Public Health, Department of Primary Care & Public Health, Imperial College London. Twitter @itasnimeo

Mohammad S Razai, NIHR In-Practice Fellow in Primary Care, Population Health Research Institute, St George’s University of London. Twitter @MohammadRazai

Azeem Majeed, Professor of Primary Care and Public Health, Department of Primary Care & Public Health, Imperial College London. Twitter @Azeem_Majeed

Competing Interests: None declared. 

Acknowledgements: AM is supported by the NIHR Applied Research Collaboration NW London. MSR is funded by the NIHR as an In-Practice Fellow. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

References:

1. GOV.UK. Vaccinations in the UK 2021 doi: Available from: https://coronavirus.data.gov.uk/details/vaccinations
2. CIDRAP. Youth, Delta variant behind UK COVID surge. 2021 doi: Available from: https://www.cidrap.umn.edu/news-perspective/2021/06/youth-delta-variant-behind-uk-covid-surge
3. Yale Medicine. Comparing the COVID-19 Vaccines: How Are They Different? . 2021 doi: Available from: https://www.yalemedicine.org/news/covid-19-vaccine-comparison
4. GOV.UK. Vaccines highly effective against hospitalisation from Delta variant. 2021 doi: Available from: https://www.gov.uk/government/news/vaccines-highly-effective-against-hospitalisation-from-delta-variant
5. Office for National Statistics. Coronavirus and vaccine hesitancy, Great Britain: 26 May to 20 June 2021. 2021 doi: Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/bulletins/coronavirusandvaccinehesitancygreatbritain/26mayto20june2021
6. Imperial College London. Covid-19: Global attitudes towards a COVID-19 vaccine. 2021
7. GOV.UK. Daily summary. Coronavirus in the UK. 2021 doi: Available from: https://coronavirus.data.gov.uk/
8. Publich Health England.  COVID-19 vaccine surveillance report – week 29. 2021
9. S. Leigh. Vaccine Hesitancy in Young Adults May Hamper Herd Immunity. UC San Francisco. . 2021 doi: Available from: https://www.ucsf.edu/news/2021/07/420991/vaccine-hesitancy-young-adults-may-hamper-herd-immunity
10. Afifi TO, Salmon S, Taillieu T, et al. Older adolescents and young adults willingness to receive the COVID-19 vaccine: Implications for informing public health strategies. Vaccine 2021;39(26):3473-79.
11. World Health Organization. Ten threats to global health in 2019. 2019 doi: Available from: https://www.who.int/news-room/spotlight/ten-threats-to-global-health-in-2019
12. Public Health England. SARS-CoV-2 variants of concern and variants under investigation in England 2021
13. Salisbury H. Helen Salisbury: Official hesitancy is not helping. bmj 2021;374
14. Majeed A, Hodes S, Marks S. Consent for covid-19 vaccination in children. bmj 2021;374
15. The New York Times. In Portugal, There Is Virtually No One Left to Vaccinate 2021 doi: Available from: https://www.nytimes.com/2021/10/01/world/europe/portugal-vaccination-rate.html
16. Fonseca IC, Pereira AI, Barros L. Portuguese parental beliefs and attitudes towards vaccination. Health Psychology and Behavioral Medicine 2021;9(1):422-35.
17. Centers for Disease Control and Prevention. Myocarditis and Pericarditis Following mRNA COVID-19 Vaccination. 2021 doi: Available from: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/myocarditis.html
18. Oxford University. Risk of rare blood clotting higher for COVID-19 than for vaccines 2021 doi: Available from: https://www.ox.ac.uk/news/2021-04-15-risk-rare-blood-clotting-higher-covid-19-vaccines
19. Dubov A, Phung C. Nudges or mandates? The ethics of mandatory flu vaccination. Vaccine 2015;33(22):2530-35.
20. Hodes S, Majeed A. Building a sustainable infrastructure for covid-19 vaccinations long term. bmj 2021;373
21. Razai MS, Chaudhry UA, Doerholt K, et al. Covid-19 vaccination hesitancy. bmj 2021;373
22. Office for National Statistics. Coronavirus (COVID-19) latest insights: Deaths. 2021 doi: Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/coronaviruscovid19latestinsights/deaths
23. Office for National Statistics. Coronavirus and the social impacts of ‘long COVID’ on people’s lives in Great Britain 2021 doi: Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/coronavirusandthesocialimpactsoflongcovidonpeopleslivesingreatbritain/7aprilto13june2021
24. Antonopoulou V et al. Which factors may help increase COVID-19 vaccine uptkae in England? . 2021 doi: Available from: https://research.ncl.ac.uk/behscipru/outputs/policybriefings/PRU-PB-011%20PRU%20covid%20vaccine%20policy%20brief%20study%204%20300421.pdf

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Earlier this year, I decided to assemble a cross-London dataset on ethnicity and recruitment in the NHS to see what it showed about the likelihood of a successful job application according to ethnicity. I undertook this as a piece of independent research but hadn’t anticipated how difficult it would be to get hold of these data.

Data on ethnicity and recruitment are not on NHS organisations’ websites—in fact, they are not routinely published in any form. So, as a first step, I submitted individual freedom of information (FOI) requests to all 18 NHS acute trusts in London to ask for access to this information. Mindful of the pressures created by covid-19, I made sure that the request I made could be fulfilled in approximately five hours.

I’ve responded to many FOI requests during my more than 30 year career across the NHS and the wider public sector, but this is the first time I have made one. My experience of answering FOI requests is that the FOI team are usually tenacious: they will write to you repeatedly until you respond to the request or give a very good reason as to why you are unable to supply the data within the 20 working day statutory limit.

Three months on from the FOI request (and eight weeks after the statutory FOI deadline for response), I finally had all but one set of data (from a trust who were still insisting on redacting the core data to a level which made it unusable). Yet arriving even at this point had been an unexpected struggle. Another two trusts told me that they had “accidentally” released the full data and would redact it if I made a similar request in the future. The rationale given by these three trusts for redacting the data was that it might breach individual anonymity. But, when specifically asked, none of them were able to explain how this could happen given the volume of job offers. 

With two trusts, the team handling FOI requests did not respond to my messages, and some weeks after the statutory deadline for response, I had to contact the chief executive’s office to ensure the team communicated with me. The team at another hospital only responded once the director of communications was alerted to the problem after I had reached out to the trust via Twitter.

The fact that trusts did not respond, redacted their responses, or returned data that were different from what had been requested sent a clear message to me. It said to me that trusts thought this issue was so unimportant they did not see the need to respond as requested, or appropriately, or at all.

I have to admit that the process of getting these data was frustrating, annoying, and at times emotionally taxing. I am in the privileged position of not having to undertake this research. I could just ignore this issue, give up on trying to access the data, and decide it’s someone else’s problem. But it really isn’t someone else’s problem. Racism in the NHS is a problem for us all. Skin colour remains an impediment to recruitment success, equal pay, and career progression. And it’s time we all stood up, acknowledged the impact that this lack of equity has on staff and on patients, and did something about it. 

A first step would be to stop doing things we have done previously that haven’t worked. We can use data on recruitment, pay, formal disciplinary, etc to identify key areas for improvement and evaluate the actions we take to assess their impact. We can then repeat what works, discard what doesn’t, and look for new solutions to try and evaluate.

At the moment, data driven approaches to identifying equality, diversity, and inclusion priorities get little traction in the NHS. I’m mystified by this when the NHS’s whole service delivery model is based on research driven treatment and when data collection is vital to pinpointing our failures, evaluating the effectiveness of what we are doing, and informing our commissioning of appropriate future work. Yet when it comes to diversity and inclusion, we end up doing the same things that haven’t worked for decades, over and over again, without evaluating the application of those processes and initiatives to find out whether they are delivering the results they should.

It is time that NHS England and NHS Improvement (NHSE/I) and the Care Quality Commission (CQC) stepped up and stopped tolerating racism in the NHS. What is needed is challenge, in a meaningful, helpful way that ensures we bring about real change. 

Data on ethnicity (and other characteristics) and recruitment, pay, formal disciplinary, etc are easily obtainable from trust recruitment and electronic staff record systems, and should be fully assessed as part of the “well led” rating in CQC inspections. NHSE/I and the CQC need to be clear with trusts that evidence of racism or any other kind of discrimination is not acceptable, must be urgently addressed, and will be proactively monitored. I would even suggest that, where there is evidence of racism, and a trust is considered “unsatisfactory” in this area, the CQC should have an equality, diversity, and inclusion version of special measures to address this. In such cases, NHSE/I could proactively use experts in this area to ensure that trusts rapidly improve.

My challenge to individual NHS trusts is to ask, “If you are not taking demonstrably effective action on this now, when will you?” It’s not enough to include nice words that speak of equality in your corporate trust documents without making them a reality. What staff and patients urgently need is effective change and an inclusive environment where we can all thrive at work.

Sheila Cunliffe is the director and principal consultant of Citou Consulting. She is a senior human resources, organisational development, and equality, diversity, and inclusion consultant/interim and researcher in the NHS and across the public and not for profit sectors. She has specialist interests in diversity and inclusion, effective leadership, and healthy workplace culture. The full results of her research can be found at https://citou.com/research-and-resources/

Twitter: @SheilaCunliffe

Competing interests: none declared.

Linked News: White doctors in London are six times more likely to be offered jobs than black doctors

Linked Feature: Black and Asian doctors still face discrimination when applying for jobs in the NHS

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Pre-print culture has mushroomed since early 2020, facilitating early, open scientific debate. Some journals, including those with highest impact factors, do not always respond favourably when manuscripts have been posted as pre-print and already covered in media—whether social or mainstream—despite having processes of submission, review, and publication lasting several months. A recent preprint on medRxiv which suggested a considerable risk of myocarditis with covid-19 vaccination was found to have made a calculation error, and retracted. The un-reviewed article may have contributed to the delayed decision to vaccinate 12-15 year olds in the UK and has been used by those opposed to vaccination. “Living” systematic reviews aim to collate evidence relating to particular research questions in an updatable manner, but the scale and speed of research makes this challenging. For example, a living systematic review of school transmission of SARS-CoV-2 was published in December 2020, finding poor quality evidence to support transmission in children in schools, but has not been updated online since. Part of the solution is to understand that, although the pace of covid-related research is unprecedented, publication and dissemination models are not always quick enough for public health need, and to work towards scientific models which put patients rather than publications first.  

Long covid is a new disease being defined at the same time as it is treated and managed. The individual, population, and economic burden has been underplayed due to a focus on acute hospitalisation and mortality. Traditional evidence takes time to accumulate, highlighting the importance of patients’ experience and the expertise of frontline clinicians in policy and system responses. However, this is not necessarily reflected in the membership of advisory committees and decision-making organisations, or research funding calls which have prioritised mechanism and pathophysiology above design and evaluation of clinical services. This creates potential obstacles to recognition and awareness of long covid, and delayed selection and evaluation of treatment strategies. The way forward must involve acceptance of limitations of current review panels and governance structures to deal with new diseases of this scale, and enabling greater cross-pollination between research, clinical, public health, and policy spheres. A change in the way patient and public involvement is viewed and enacted is also long overdue.

In the age of social media, open science, and the continuous news cycles, we are all looking at other countries and other settings as much as our own. Given news and research from China and Italy in early 2020, one could argue that the first UK lockdown was delayed, but the second lockdown was definitely late judged by the projected impact of covid-19 on high-risk populations, subsequent excess mortality, and indirect effects on non-covid care. Approaches to masks, opening of schools and universities, and border controls are other instances where there has been a difference between published evidence or policy in other countries, and the UK situation. The eventual decision to vaccinate children in the UK occurred a few weeks after school started, when cases had already started to rise. Several other countries had already begun vaccination programmes in those over the age of 12 and 16 years with published data. Delays, differences, or discrepancies in health policy and the rationale for decision-making should be clearly communicated to the public.

The common thread is the gap in clear, public communication of information, and acknowledgment of the limitations and public involvement in decision-making. Cognitive dissonance may be likely or even inevitable in pandemics, but reduction strategies can include acquiring new information; changing beliefs, attitudes, or behaviours; or reducing the importance of the dissonant changing beliefs, attitudes, or behaviours. This framework may help public, researchers, health professionals and policymakers navigate tensions in the rapidly-shifting evidence and policy landscape of emergency preparedness.

Amitava Banerjee, Professor of Clinical Data Science and Honorary Consultant Cardiologist, Institute of Health Informatics, University College London.

Twitter: @amibanerjee1

Competing interests: none declared.

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“If you know your history, then you would know where you’re coming from.”     

Bob Marley sang these words in the song Buffalo Soldier 40 years ago, but they capture the essence of much that underpins the current thinking around decolonisation. If we all understood each others’ and our histories, then we would not discriminate against those whose backgrounds are different to ours, even unintentionally. Although a lot of work is being done around decolonising medical education in undergraduate courses (for example, at Bristol University), ideas about how to apply this in the NHS workplace and implement it within postgraduate medical training are less well developed. 

Attention has been drawn to the differential attainment or “award gaps” seen in doctors from ethnic minority backgrounds. For many years we have also seen evidence of representation gaps; for example, although doctors from ethnic minority backgrounds make up 41.9% of the NHS medical workforce, they only occupy around 20.3% of senior medical director roles (2020 data). Discrimination and microaggressions are common experiences described by ethnic minority doctors in the NHS, and these acts of bias can create an environment where even more harms are perpetuated. In the first two months of the covid-19 pandemic, for example, 94% of the NHS doctors reported as dead were from ethnic minority backgrounds. 

For many migrant doctors, factors associated with acclimatising in new working environments are thought to contribute to the award gap, as well as the effects of discrimination and bias. Initiatives like cultural competence training, equality and diversity training, enhanced induction programmes, and unconscious bias training have endeavoured to remove some of these obstacles. However, these factors cannot fully explain the award gaps that UK graduate doctors from ethnic minority backgrounds still face. 

To unpick the root causes of these inequalities, I’d argue that we need to look closer at the social determinants of learning in postgraduate medical education. The learning that occurs formally and informally from peers, mentors, cross-professionals, and medical supervisors forms essential and deep learning experiences for doctors during their training. This was aptly reflected in the GMC report What supported your success in training?, which found that support from colleagues and supervisors underlies many doctors’ success stories. I’d argue that the relative lack of such social support and professional encouragement in the workplace for doctors from ethnic minority backgrounds contributes to award gaps and the excess GMC referrals seen for doctors from ethnic minority backgrounds. 

Research has found that many managers in NHS organisations struggle to provide feedback to those from different ethnic backgrounds to themselves. This has a whole host of negative implications, meaning that some trainees may not be provided with feedback that is critical to learning and development, and won’t take up coaching and mentoring opportunities. Social barriers like these between those of different backgrounds may manifest overtly as bullying and harassment, or as covert/unconscious biases that operate discreetly, and guide our day to day actions. 

To “know our history” is to also accept that the concepts underpinning historical racial hierarchies were born out of a need to legitimise practices like slavery and colonial rule, and that “othering” people of colour was essential to this. Pseudosciences like phrenology, where skull size and shape were linked to race and thereby used to prop up beliefs of racial superiority, stoked these ideas. While these scientific theories have been debunked, sentiments around racial hierarchies are still deeply rooted in some parts of our society, and acknowledging this is perhaps the first step towards “decolonising” our current clinical learning environments. 

Since its inception, the NHS has relied on migrant doctors and nurses, particularly those from Commonwealth countries—indeed, their migration was intentionally facilitated in the twilight years of the British Empire. Yet an awareness of this history is often missing from public memory and in contemporary social and political debates. Commentators have described this erasure of the role of migrants in providing essential NHS workforce requirements as a “collective amnesia” and it continues today. 

Around 37% of doctors are medical graduates from outside the UK, with 26% coming from outside the European Economic Area, yet the continued, valuable, and essential contribution of this workforce to the NHS is not the predominant narrative that surrounds this group of doctors. In the 2000s, the government’s plan to restrict immigration to the UK by capping the number of non-EU migrants, along with a Department of Health requirement that EU doctors be preferentially recruited over non-EU doctors, seemed to deny this history and even undermine it. This led to many migrant doctors from outside the EU feeling undervalued and unwelcomed in the NHS—sentiments that were relived more recently when Dido Harding pledged to end England’s reliance on overseas doctors during her bid to become head of NHS England.      

Engendering a sense of belonging is essential for all doctors’ wellbeing, and is likely lacking for many doctors from ethnic minority backgrounds in the NHS workplace, who experience discrimination and lack the professional backing extended to other colleagues. Further research would help us to better understand these narratives, and may provide solutions to remedy this. 

Only by first knowing our history can we develop compassionate and inclusive learning environments for our doctors of diverse backgrounds. This knowledge of our shared past and present helps us to challenge discrimination and promote a sense of belonging in our doctors from ethnic minority backgrounds. NHS leadership must show compassion and humility in this learning journey, exercised through the lens of history, allowing trainees’ own individual stories to emerge, which we all need to listen to openly.      

Charu Chopra is associate postgraduate dean for equity, diversity, and inclusivity at Scotland Deanery. She is also a consultant immunologist at the Royal Infirmary of Edinburgh. Twitter @_DrCharu

Competing interests: none declared.

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The report is most forceful in its criticism of the delay in responding to the pandemic in March 2020. Describing the government’s approach as “fatalistic,” it argues that there was a consensus between official scientific advisers on SAGE and the government amounting to groupthink on what should be done. This involved trying to manage the spread of covid through the population rather than acting to stop it altogether by following the lead of many east and south east Asian countries.

The report argues that groupthink could have been avoided if ministers and other advisers had challenged the advice given by SAGE. They were reluctant to do so in the face of a consensus developed by official scientific advisers and this only changed when the likely impact on the NHS became clear. The committees conclude that in future government and SAGE should facilitate external and structured challenge to scientific advice, including from other countries and a wider range of disciplines. 

The committees are almost as forceful in their assessment of the shortcomings of the test, trace, and isolate programme, the mishandling of social care, and the impact on at risk communities. In each case they set out clearly the choices made by government and the opportunities missed along the way. They also criticise the UK’s preparedness, based as it was on the risk of an influenza rather than a SARS pandemic, and complex and confusing communications with the public after the initial stages. 

More positively, and rightly, the report praises the development of vaccines, the delivery of the vaccination programme, and the assessment of treatments in the Recovery trial. The constructive contribution of the MHRA and the JCVI is also acknowledged. The work of the armed forces in the response, including on the testing and vaccination programmes, leads to a recommendation that they should have a standing role in preparing for and responding to emergencies like pandemics.

The report also recommends that the success of the vaccine task force should be replicated in other areas of public policy. This means bringing in teams of outside experts to work alongside ministers and civil servants with the scope for making decisions at risk, outside conventional procurement procedures.

The main purpose of the inquiry was to learn lessons for the future. The way in which the government was organised is the focus of many of these lessons and neither COBRA nor the Civil Contingencies Secretariat in the Cabinet Office come out well. The committees recommend that the secretariat should be empowered to stress test emergency plans in government departments and should have the resources and capabilities to do so effectively.

In an otherwise comprehensive review, there are two significant omissions in the report. The first concerns the role of the devolved administrations, elected mayors, and local authorities. The UK’s response was among the most centralised in the world and little effort was made to seek the views of leaders in other home countries nor those in local government in England. Better decisions would almost certainly had been made if this had happened, and if leaders in Whitehall had sought the expertise of those at the forefront of the response in care homes, schools, and public health teams.

The second and bigger omission concerns the role of the prime minister who was slow to recognise the seriousness of covid and did not attend a meeting of COBRA until 2 March. The prime minister’s absence matters because Boris Johnson was the dominant figure in the government having won a sizeable majority at the December 2019 general election and taken the UK out of the EU on 31 January 2020. As other accounts have shown, he was preoccupied with Brexit and personal issues in the early stages of the pandemic and his absence from key meetings contributed to the lack of challenge to official scientific advice highlighted by the committees.

When the prime minister did choose to engage it took time for him to understand the implications of what was happening and to be persuaded to act decisively. His concern throughout the pandemic was that the damage to the economy from lockdowns would be greater than the damage to health of not locking down and he was instinctively opposed to constraining people’s liberties. The dithering and delays that resulted were arguably as consequential as the groupthink criticised in the committees’ report.

The prime minister’s chief adviser, Dominic Cummings, explained in his evidence to the inquiry that the prime minister preferred to work in a chaotic environment because this meant that people would look to him “to see who is in charge.” Chaos helps explain why there was no coherent strategy to guide the pandemic response supported by credible implementation plans. This resulted in avoidable errors that led to a steep decline in economic performance alongside high death rates.

It will be for others to fill these gaps ahead of a full public inquiry. For now, the committees have laid out clearly and convincingly the strengths and mainly the weaknesses of the government’s response based on the evidence of some of those who were in the room where it happened and others who worked with them.

Chris Ham is chair of the Coventry and Warwickshire Integrated Care System, Co-Chair of the NHS Assembly and non-executive director of the Royal Free London Hospitals NHS Foundation Trust. He gave evidence to the inquiry and writes here in a personal capacity.

Competing interests: none further declared. 

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On 17 March 2020, the government’s chief scientific adviser Patrick Vallance said that keeping the final tally of British deaths from covid below 20,000 would be “a good outcome.” Tragically, the total is now almost 138,000 and is still rising. With the incidence of covid remaining many times higher than in our European neighbours, one might think that Boris Johnson, the UK prime minister would want to know why the country has done so badly on his watch. Yet, he seems in no hurry to find out, and the long-awaited inquiry will only begin to take evidence in spring 2022. Fortunately, he does not need to wait that long. Two House of Commons committees, overseeing health and social care, and science and technology have helpfully provided their own joint report. It makes uncomfortable reading.

The United Kingdom has had some successes to celebrate. The committees praise the achievement of the vaccine programme, which it calls “one of the most effective in the world.” It also commends the NHS for the way that it expanded intensive-care capacity, although it notes that this was at a price, with serious disruption of other services. The Armed Forces come in for particular praise, providing essential logistic support at key moments. But in other areas, the assessment is much less positive.

It begins by considering pandemic preparedness, contrasting the UK’s position in second place in the Global Health Security Index, published in 2019, with the reality which, it notes, “had serious deficiencies.” Perhaps the most important problem identified by the committees was how the government was working to a plan developed for pandemic influenza rather than a coronavirus. This had many ramifications, although it is not clear whether they were aware, when writing their report, that there had been an exercise to test the response to MERS, which the government has fought hard to conceal. They do, however, note the UK’s failure to learn lessons from other countries, and in particular those in Asia that had experienced SARS and MERS. The committees note how the UK’s approach was “particular and, in some respects exceptional,” but not in a good way.

Witnesses to the inquiry painted a picture of dysfunctionality at the heart of government. This will not be a surprise to seasoned observers. However, the scale of the problem set out in the report is truly shocking. The account of working in the Cabinet Office Briefing Room, commonly known as COBR, is revealing. Intended primarily for dealing with threats from terrorism and hostile powers, laptops and phones are banned. However, when participants are depending on access to scientific evidence and data, this means that they are essentially working in the dark. As a consequence, they soon moved into the Cabinet Room, which lacked these constraints. 

This emphasis on secrecy had many unhelpful consequences. The principal of “need to know” was, by default, interpreted as placing the burden of proof on those who needed data, including the modellers tasked with estimating the future evolution of the pandemic and the directors of public health and local authorities, who were unable to find out what was happening in the population for whom they were responsible. Just like those struggling in COBR, they too found themselves working in the dark. 

The report is especially critical when they come to the initial response to the pandemic. They argue that “The veil of ignorance through which the UK viewed the initial weeks of the pandemic was partly self-inflicted.” Concerning the gradual approach to the initial lockdown, it says “It is now clear that this was the wrong policy, and that it led to a higher initial death toll than would have resulted from a more emphatic early policy” and described the decisions taken at the time, and the advice that led to them, as among “the most important public health failures the United Kingdom has ever experienced,” despite the UK having some of the best expertise available to any government and a democratic system that allowed policies to be challenged.

Turning to the initial response, the report notes how there has been much debate about whether it was official policy to pursue herd immunity. The report notes differing interpretations of statements made at the time, but it does conclude that the policy was based on fatalism, which “amounted in practice to accepting that herd immunity by infection was the inevitable outcome.” Contrasting the UK’s approach to that taken in East Asia, it describes this as a “serious error.” Worryingly, it finds that this was based on what seems to have been a consensus among those advising ministers that such a course was correct, with one exception, a paper that urged acting earlier. Again, the issue of national exceptionalism emerges, with the report noting that the UK was “an outlier internationally.” The UK’s policy would change abruptly, but only once “multiple people within the Government and its advisers experienced simultaneous epiphanies that the course the UK was following was wrong, possibly catastrophically so.” Reading the detailed accounts of what then ensued it is difficult to argue with the committees’ use of the word “astonishing.”

The government has argued throughout that it was “following the science.” Yet there were times when the advice was appropriate, but it failed to follow it, such as when it rejected arguments from SAGE in favour of a “circuit breaker” (although the report describes slightly differing views among senior advisers). But some of the science it did follow was simply wrong. The report catalogues numerous examples of views that were later found to be incorrect. Of course, that will always be the case with the benefit of hindsight. However, it includes accounts by those who say they had concerns at the time, but found it difficult to challenge what they were being told. Others from outside the government’s structures, such as Paul Nurse, wrote to express their concerns, but received no response. 

The failure to draw on international expertise comes in for particular criticism, with the report noting how only one of 87 people listed as attending SAGE meetings was from a non-UK institution. The failure by Public Health England to examine what other countries were doing in their test and trace programmes is also noted, something that is especially worrying given that this information was easily available. It is difficult to avoid the conclusion that the UK was, in many respects, oblivious to what was happening elsewhere. 

It is only possible to skim the surface of this lengthy, detailed, and persuasively argued report. Other sections address the well known serious failings in areas such as testing and tracing, social care, with the committees clearly unimpressed by its leadership, and the disproportionate impact of covid-19 on ethnic minority communities and those with learning difficulties. Each will repay reading in detail. 

The relationship between ministers and advisers is a difficult one. Twenty years ago another British prime minister had to make a decision that would have momentous consequences using evidence presented to him. Then it was Tony Blair advised by the Joint Intelligence Committee about the search for weapons of mass destruction in Iraq. According to the official Iraq Inquiry, the problem was that those providing the evidence, in the Defence Intelligence Service, were unable to challenge how it was being used and the Joint Intelligence Committee, which was interpreting it for the prime minister, was unwilling to.

The inquiry into the pandemic response, when it finally happens, will have much to discuss. This report suggests that the advice to ministers and decision making within government must feature prominently in its terms of reference. 

Martin McKee, professor of European Public Health, London School of Hygiene & Tropical Medicine. 

Competing interests: MMK is a member of Independent SAGE.

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The letter comes on the back of a recent editorial, which was simultaneously published across more than 220 international health journals, that called for global warming to be limited by 1.5C and for human health and equity to be central to all climate change mitigation and adaptation actions.

In the letter, health professionals say fundamental changes to the way we live are needed to prevent a prolonged health crisis as a direct consequence of climate change. Since March 2020, more than 4.5 million people have died from covid. By comparison, they say air pollution accounts for more than 7 million premature deaths every year. Many more people die from extreme weather events, malnutrition, and illnesses caused by higher temperatures such as dehydration, renal function loss, skin cancers, and water- and vector- borne diseases. Health professionals say the direct and indirect impacts of climate change will lead to many more millions of people dying over many years if we do not act now. And we have the potential to turn it around—to invest in a fairer, healthier, cleaner, more sustainable way of life that will both protect the planet and improve our own health and wellbeing.

The 2021 Lancet Countdown on health and climate change is expected to be published over the coming weeks, with its annual assessment of how well governments worldwide are delivering the commitments they made under the 2015 Paris Agreement to keep global temperature rises below 2C by 2050. Targets have not been met. The world is currently on a trajectory for temperatures to have risen by 2.7-3.1C above pre-industrial levels by the end of this century. Current evidence makes clear that in order to prevent catastrophic health impacts and deaths, global warming must be limited to 1.5C. 

The letter states that every tenth of a degree in excess of 1.5C will take a toll on people’s lives and health, and that no one is safe from the risks. It is those who contributed least to the problem who are least able to protect themselves against it, and the onus is now on those wealthier nations who have benefitted most from the activities that caused the climate crisis to bear more of the cost burden of limiting warming.

The health editorial, Healthy Climate Prescription letter, and 2021 Lancet Countdown will be delivered by a team of children’s health professionals from across the UK who will travel on bikes from Great Ormond Street Hospital in London to COP26 in Glasgow. The “Ride for their Lives” team will stop at major cities along their journey accompanied by Pollution Pods, which will allow people to experience first-hand the impact of different levels of air pollution.

The final leg of their journey will take them to Glasgow, where the voice of the world’s health community will be heard loud and clear in a collective call to action for a healthy climate prescription based on tangible evidence. 

Specific actions being called for include national commitments to limit warming, a transition from fossil fuels to cleaner energy solutions, high-income countries to transfer funds to low-income countries to help achieve targets, the development of resilient, low-carbon, sustainable health systems, and pandemic recovery that is consistent with climate action and reduces health inequalities.

An innovative, forward thinking approach to how we can adapt our way of life through the redesign of transport systems and cities, how we produce and distribute food, and how we deliver our health services will help to both achieve these climate targets while also producing huge positive health and economic outcomes. By focusing investment in a healthier and cleaner future we can produce new jobs, cleaner air, better diets, more active societies, and more energy efficient homes. 

The letter closes with the statement, “These climate actions must be taken now to protect the planet, and the health, wellbeing, and prosperity of all people alive today and for generations to come.”

Individual, local, national and international action is needed—but the greatest impact will be felt when the world’s leaders come together, work together and join together in a shared ambition and commitment to change the course of climate change.

Elaine Mulcahy is the interim director of the UK Health Alliance.

Competing interests: none declared. 

• The Healthy Climate Prescription Letter can be signed here.  
• Find out more about Ride for their Lives.
• The cross journal editorial can be viewed here: 
• The Lancet Countdown on health and climate will be published here. 

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The official inquiry into the UK’s handling of the covid-19 pandemic will have a long list of things to consider. This week, another item was added to that list. Previously, it seemed that one reason why the response was so problematic was that when ministers dusted off the plans for a pandemic all they had was one for influenza. Matt Hancock, the former secretary of state for health and social care said as much when asked by MPs, replying “Famously, all the preparations and the plans that were in place were for a flu pandemic.” Indeed the department of health and social care had invoked this argument to justify its failure to act on recommendations from the previously secret report of the 2016 Exercise Cygnus, which tested the response to pandemic influenza  and had highlighted many weaknesses in the UK’s preparedness. 

Yet, with the utmost reluctance, the department of health and social care has now conceded that was not exactly true. In 2016, Public Health England (PHE) had undertaken Exercise Alice, a one day table top exercise to identify any challenges to managing any cases reaching Britain of another coronavirus, MERS-CoV, thought to have originated in the Arabian peninsula, and which had caused major outbreaks in some other countries, in particular South Korea. Now, after persistent efforts by an NHS doctor, Moosa Qureshi, the partially redacted report of that exercise has been released. Its release followed Qureshi’s warning that he would appeal PHE’s refusal to release it to the Information Commissioner, challenging PHE’s argument that publication “could precipitate an unnecessary heightened public concern that could lead to loss of public confidence in the Government’s and the NHS’s covid-19 response.” 

Does this matter? It is possible to argue that the report’s recommendations were not especially relevant to covid. MERS and covid-19 are both caused by coronaviruses, but ones that behave quite differently. Covid is much more transmissible and, crucially, is spread by people who are asymptomatic. 

Yet, many of its recommendations do seem applicable. For example, the report raised the issue of checks at borders, worryingly noting that “the participants did not find an answer to this and recommended that this required more exploration.” Yet SAGE did not discuss border control measures until 28 April 2020 and restrictions were only introduced on 8 June 2020. 

Contact tracing and isolation was another area where clarity was found to be lacking, and “Terminology was used interchangeably.” The report continues, “The group did not resolve the quarantine/self isolation issue.” It recommended an assessment of the costs and benefits of different regimes for cases and contacts. Yet, when the covid pandemic came there was a long delay, to 28 May 2020, before the test and trace service was launched and even now many questions remain about its performance. From the beginning, support for isolation, highlighted as an issue in the report, has been a particular weakness.

Another issue raised was use of personal protective equipment (PPE), with concerns about whether frontline staff had adequate training and whether supplies were adequate. It seems superfluous to note that this does not seem to have been followed up. 

It is possible that some of the other recommendations were acted upon. For example, a paper that was called for to bring together lessons from Korea’s experience may have been written. If so, it could take another monumental effort to obtain it. The UK does have excellent community surveys, the REACT and ONS COVID Infection studies, but how much they owe to Exercise Alice is unclear. 

So if we don’t seem to have learned much from Exercise Alice, what can we learn from the attempts to conceal it? 

There are legitimate grounds for withholding some documents on measures to counter threats to health. These include measures against hostile activity, for example cyber attacks, such as the WannaCry attack that disrupted large parts of the NHS in 2017, believed to have originated in North Korea. Similarly, we would expect that the government would withhold details of measures against organised crime or corruption, both activities that pose serious threats to health. 

Yet, it is hard to accept the argument that its publication could have damaged public confidence, at least not any more than the many other things that happened, from Dominic Cummings’  trip to Barnard Castle to the seemingly endless procurement scandals. And if it had been published, there would have been pressure to respond to its recommendations, not least from the Commons Health Select Committee which worked hard to hold ministers to account. 

There is a long history of secrecy being used to conceal political and administrative failures and the determined efforts to prevent the report of Exercise Alice seeing the light suggest that little has changed. Indeed, it may even be worse and British newspaper editors have written collectively to demand an inquiry into a newly created Clearing House in the Cabinet Office that, despite ministerial protestations, is widely viewed as reducing transparency. 

The fact that its recommendations do seem to have been, at least largely, ignored is no surprise. It is widely recognised that large parts of the machinery of government were dysfunctional at the time as civil servants struggled to find meaning in the former UK prime minister Theresa May’s Delphic statement that “Brexit means Brexit.” However, many of the weaknesses in the UK’s governance arrangements revealed by Brexit have, if anything, got worse.

In May 2020, myself and others called for a rapid inquiry that could learn lessons from the first wave of the pandemic. That did not happen and mistakes continued to be made. Now, the UK prime minister Boris Johnson has conceded that there must be one, following pressure from bereaved families. However, he seems in no hurry to find out what it has to say. It will not even start until Spring 2022, a delay Sir Jeremy Farrar, a government adviser, has described as a disgrace. However, when it does convene, it will have much to discuss. 

The prime minister views himself as a historian. Perhaps he has forgotten that Richard Nixon’s downfall after Watergate owed as much to the cover up as to the act itself. 

Martin McKee, Professor of European Public Health, London School of Hygiene & Tropical Medicine. 

Competing interests: MMK is a member of Independent SAGE.

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Chirally catalysed reactions are not new. William Knowles, Ryoji Noyori, and Barry Sharpless won the 2001 Nobel Prize for their work on chirally catalysed hydrogenation and oxidation reactions, which enabled the synthesis of medicines such as levodopa. However, the techniques they used involved expensive metals that were difficult to use. MacMillan and List, using amino acids such as proline, improved on their methods.

In 1815 Jean Baptiste Biot showed that when you shine polarized light through solutions of some substances the light is rotated, a phenomenon known as optical activity. Then in 1848 Louis Pasteur showed that tartaric acid exists in two forms with different optical activities: one form rotates polarized light to the right, the other rotates it to the left.

Left: Jean-Baptiste Biot (1774–1862);   Right: Louis Pasteur (1822–1895)

The two forms of tartaric acid have exactly the same chemical composition, but asymmetric carbon atoms result in chiral structures that cannot be superimposed on top of one another (just as your left hand will not fit into a right-hand glove; Figure 1).

Figure 1. Top: Two stereoisomers of glutaraldehyde, mirror images of each other, which exist because of the asymmetric carbon atom; Bottom: two stereoisomers of tartaric acid, which has two asymmetric carbon atoms; these molecules are called chiral molecules, from the Greek word χείρ, a hand

In 1828 Joseph Louis Gay-Lussac took an acid that Paul Kestner had isolated from grapes and called it racemic acid (Latin racemus, a bunch of grapes). It was chemically identical to tartaric acid, but it didn’t rotate polarized light. When Pasteur looked at racemic acid crystals microscopically, he saw two different types. He teased them apart. A solution of one behaved like ordinary tartaric acid, while a solution of the other rotated light in the opposite direction. Racemic acid, being a mixture of the two, was neutral to polarized light. So the term racemate was adopted to describe a mixture of equal amounts of two stereoisomers.

If a substance rotates polarized light to the right, it is called dextrorotatory and is designated by the letter d or the symbol (+). If a substance rotates polarized light to the left, it is called laevorotatory and is designated by the letter l or the symbol (–). However, these are functional designations. The direction of rotation can be affected by factors such as pH, temperature, and the wavelength of light used. They do not tell you about the spatial configuration of the molecules. For that other symbols are used: absolute configurations of chiral centres are designated by R and S (from the Latin “rectus” = right and “sinister” = left) and D and L (from the Latin “dexter” = right and “laevus” = left); relative configurations are designated by the Latin words cis (“on this side”) and trans (“on that side”), and the abbreviations Z and E (from the German words zusammen, together, and entgegen, opposite).

There are two types of stereoisomers, enantiomers and diastereomers (or epimers). In enantiomers, asymmetry occurs either at a single chiral centre, in molecules with only one such centre, or at more than one when there are more than one (in which case there will be more than two enantiomers). Diastereomers are molecules with two or more chiral centres, but asymmetry at only one of them. In such cases the isomers are not mirror images of each other; quinine and quinidine are diastereomers. Enantiomers have similar physicochemical properties to each other; diastereomers do not. Chiral asymmetry is usually due to a carbon atom, but not in all cases; for example, sulfur and phosphorus atoms can be asymmetrical, as in cyclophosphamide. Table 1 lists examples of important differences between enantiomers.

Table 1. Examples of differences between medicinal enantiomers

Stereoisomers are sometimes described as being active or inactive, and the terms “eutomer” and “distomer” have also been used. However, this is not generally helpful, since in many cases the two enantiomers have different actions.

Of all synthetic drugs used in clinical practice, about 40% are chiral and about 90% of those are marketed in the racemic form (i.e. as an equal mixture of the two stereoisomers). Naproxen, esomeprazole, and arketamine are examples of synthetic compounds that are marketed as single stereoisomers. However, it is often not worth using a single isomer, because of in vivo conversion to the other, as in the case of some arylalkanoic acids.

Finally, Figure 2 shows two famous enantiomers.

Figure 2. John Tenniel’s illustration of Tweedledum and Tweedledee from Through the Looking Glass, and What Alice Found There; they are enantiomers, or more properly enantiomorphs, objects that are mirror images of each other; the word first appeared in German in 1856 and in English in 1885, six years before Carroll’s book was published; enantiomer is from the Greek words έναντιος, opposite, and μέρος, a part or share; enantiomorph is from έναντιος and μορϕή form; true to form, Tweedledum gives Alice his right hand to shake, while Tweedledee gives his left hand

Jeffrey Aronson is a clinical pharmacologist, working in the Centre for Evidence Based Medicine in Oxford’s Nuffield Department of Primary Care Health Sciences. He is also president emeritus of the British Pharmacological Society.

Competing interests: none declared.

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Accessing healthcare services can be daunting at any age, but even more so as a baby, child, or young person. Can you imagine being told life changing information and not having any idea of what’s going on? It’s a difficult and helpless position to be in, and we felt overwhelmed, anxious, and vulnerable when we experienced this as children and young people. When all your decisions are made for you, albeit with the best of intentions, and you don’t have much involvement apart from receiving the treatment, it’s easy to feel fearful and powerless. Yet everyone is entitled to a say in the healthcare services that they use and a child or young person is no different. 

The United Nations Convention on the Rights of the Child states every “child who is capable of forming his or her own views has the right to express those views freely in all matters affecting the child.” The National Institute for Health and Care Excellence (NICE) recently published guidance on Babies, Children, and Young People’s Experience of Healthcare, and this principle has been embedded throughout the guideline. By actively involving the views of children, young people, and the parents and carers of babies and young children, this guidance truly represents those who use the service and will mean it can make a real difference.

The recognition that children and young people have a right to share their perspectives is not only woven throughout the recommendations, but was also remembered all the way through the guideline development. From scope development to publication, young people with personal experiences of accessing healthcare have been involved in this guideline. 

Having personal experience of accessing healthcare gives you a unique viewpoint that is not always heard, especially if you are from under-represented groups, including those who are under 18, disabled, from an ethnic minority background, or who don’t have English as a first language. It was vital for these voices and experiences to be heard, listened to, and then put into this guidance to ensure it can improve care for as many people as possible. The guideline committee included four young people with varying levels of experience accessing healthcare (including two of us, Aishah and Emma). Having this wealth of experience to draw on meant that we were able to bring our expert opinion and real life testimonies to the guideline committee meetings, rather than just relying on examples from research or journal articles.

The guideline has formed recommendations in a broad range of areas, but we want to highlight two in particular. First, communication. We know from our experiences that often when our parents and carers are present, healthcare professionals will direct all communication towards them, even though it’s about us. This can be disempowering and risks us disengaging with our healthcare (for example, by being reluctant to access services or adhere to treatment). It’s essential that we feel included in conversations and that our preference of communication is understood.

It is so important to engage with and provide information to a child or young person in a form of communication that they feel comfortable with, whether that be through Makaton, pitching the language used at the right level, or using additional visual aids for support. It can help them feel more at ease, builds trust, and opens up more opportunities for them to be involved in their own healthcare journey.

Shared decision making is an important part of any individual’s healthcare journey—especially a child or young person’s. At this age we can have little involvement and voice in our healthcare, but shared decision making helps to position us in the centre of our care. The NICE guideline sheds light on how children and young people can be supported to make decisions, even if they’re as simple as choosing a plaster cast colour or food options on a menu. As a child and young person, we’ve both had similar options chosen for us, but when we knew what we wanted, why weren’t we asked? Being involved in simpler decisions that may not have a direct impact on our healthcare outcome can seem unimportant, however it’s crucial, because it affects our overall perception of healthcare and builds our confidence to engage in bigger healthcare decisions. It is also well known that the transition from paediatric to adult services can be a really difficult time for patients and it’s not hard to see why: how can we be responsible for our own care if we haven’t had the opportunity to learn how to do it?

As part of the evidence for our recommendations, NICE commissioned the National Children’s Bureau to run focus groups with 200 children aged 4-15 years old. To conclude, we’d like to include their voices about how they felt being involved: “Young person’s voices should be listened to, valued, and considered to ensure that the health service can be accessible to all”; “The best thing is giving our opinions and being part of something important”; “I like you listening to my views, it’s awesome!”; “I really like that it feels that you all care about my opinion.” 

Through this guideline, we saw that it was possible to fully engage with children and young people. Now it’s time to put that into practice across healthcare.

Aishah Farooq, committee member of the NICE guideline on Babies Children and Young People’s Experience of Healthcare; young governor for University Hospitals Bristol and Weston; NHS England Youth Forum alumni; NHSE public patient voice partner for the asthma workstream. Twitter @ItsAishahF

Emma Beeden, committee member of the NICE guideline on Babies, Children, and Young People’s Experience of Healthcare; NHS Youth Forum alumni; member of the British Medical Association Patient Liaison Group. Twitter @emmabeeden

Catherine White, chair of the NICE guideline on Babies, Children, and Young People’s Experience of Healthcare NICE. Twitter @cswhite100

We would also like to acknowledge support from the National Institute for Health Research (NIHR) through the Applied Health Research (ARC) programme for North West London. The views and opinions expressed by the authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR,  the Department of Health, or NICE. 

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In 2015, I analysed the data on the research productivity of professors at our medical school and compared the results for women and men. During the previous decade, 60% of our medical students were women, but intriguingly only 18% of all-ranked professors were women (30% of assistant, 19% of associate, and 13% of full professors were women). On average, women professors had lower h-indexes (-9.5-points), had published fewer articles (-71 articles), and their papers were also less cited (-2516 citations) than those of their male counterparts. As research productivity indicators can only increase, the lower scientific productivity of women professors overall was probably explained by the fact that many women were recently promoted as assistant professors, the lowest professorial rank. Unfortunately, data on marital status and parenthood were not available, although they are known to be associated with research productivity. It would have been important to assess representativeness of women among professors after adjustment for those confounders. But it was also possible that the academic research community perpetuated sexist attitudes and unequal treatment of researchers based solely on their gender.

Interestingly, in a research study of published articles, we found that research tasks were stereotypically distributed with no change over time (15 years): women contributed more frequently to data collection and materials provision, to administrative, technical, and logistical support while men contributed more frequently to reflective tasks (conception, design, writing, fundraising). This might explain differences in the distribution of prominent authorship positions. During the covid-19 pandemic, research production has exploded globally compared to previous years; in the meantime there have been huge economic consequences with women reported as being the most affected. The pandemic has provided a unique opportunity to assess the place of women in scientific production and to assess if gender disparities were deeper compared to pre-pandemic. In this article, we report that women’s visibility in prominent authorship positions on covid related manuscripts was deeply reduced during the early phase of the pandemic, but then narrowed in the most recent months reaching values very similar to pre-pandemic. 

As scientific publication is key for academic promotion, the objective of our larger ATHENA project is to assess if women first authors have the same chance of acceptance for publication as men first authors, independent of key study and author attributes. This project, funded by the Swiss National Foundation, is ongoing and involves a large number of biomedical journals from various specialties. 

Angèle Gayet-Ageron, head of unit, professor, Division of Clinical Epidemiology, University Hospitals of Geneva, Geneva, Switzerland.

Competing interests: see full declaration on research paper. 

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Recently the Obesity Health Alliance (OHA)—a coalition of 45 leading health charities and medical royal colleges—launched their new report “Turning the Tide: A 10-Year Healthy Weight Strategy’” for the UK. Obesity rates have increased significantly across the UK over the last 30 years, despite 14 government health strategies since 1991 that have set targets for obesity reduction in England, with similar failed efforts in the devolved nations. In total, these strategies contained 689 recommendations. Today, the majority of adults in England—68% of men and 60% of women—are above a healthy weight, and over a quarter are living with obesity (27% of men and 29% of women). Excess weight prevalence is highest among the lowest socioeconomic groups in both adults and children. 

The OHA’s strategy was developed over two years by a working group chaired by Anne Johnson. Through a process of consensus-building, informed by a series of evidence reviews and expert papers, the strategy includes 30 recommendations for action in the years ahead.

It notes that the commercial food system has fundamentally changed over the second quarter of the 20th century. The key goal of this food system was to eradicate hunger and ensure adequate food supply, however it has led to a complex adaptive system in which the need for readily available and accessible food has driven an explosion of ultra-processed foods that are highly palatable and heavily marketed to both meet and drive consumer demand. This has altered what we eat and how we behave in the same way that commercially mass produced cigarettes made smoking a normal part of life for the vast majority last century. Smoking resulted in hundreds of thousands of preventable premature deaths in the decades that followed until governments took action and changed the system to prevent smoking uptake and support existing smokers to quit. 

The evidence is clear that the drivers of healthy weight are even more complex than those involved in tobacco use. The obesogenic environment, to which we are all exposed to from infancy onwards, whereby calorie-dense, nutrient poor food is readily accessible, abundant, affordable, and normalised, and physical activity opportunities are not easily available, affects us all. The pervasive and ubiquitous advertising and promotion of unhealthy food and drinks allows industry to “set the tone” of our food environment, creating, and maintaining this obesogenic environment that makes it inherently difficult to achieve a healthy diet. 

Obesity cannot be addressed one person at a time, and behind the statistics are people living with obesity who often experience stigma and discrimination that can affect their mental health and willingness to access healthcare. Stigma stands in the way of public health and must be eradicated.

The strategy makes recommendations across key areas: 1) stigma; 2) food and drink products; 3) the marketing mix; 4) pricing; 5) the environment; 6) advertising and promotions; 7) early years; 8) management, treatment and support; and 9) improved policymaking processes. Each of these areas require addressing in their own right, but combined the recommendations set the clear, long-term, evidence-informed agenda needed to turn the tide and improve healthy weight across the UK population. The 30 recommendations made are set out in a “KIND” framework, aimed at building on existing policy progress as well as identifying new routes for action. The KIND framework includes:

• Keep policies already in place or that are due to be implemented that supports a healthy weight environment; 
• Intensify existing policies or approaches to increase impact;
• New proposals that are recommended for evidence-informed actions;
• Develop policies based on the results of new, promising areas for research and investment.

The framework sets out not only the stage of policy development in which each recommendation sits, but also the actor(s) that should enact that recommendation. It is not enough to simply name route for action, but we need to establish clear directives for those bodies and organisations responsible to implement necessary change. 

The role of industry is not absent here, and it is vitally important that we acknowledge the power that companies currently has over our food environment, as well as the regulation of the environment. We have clear evidence demonstrating that industry involvement in policy-making designed to remedy the harms industry products contribute to is not conducive to the creation of healthy public policy, and this must be actively managed throughout the policy process. 

As we look ahead to recovery from the covid-19 pandemic, progressing efforts to achieve a healthy weight across the UK population must be at the heart of public health. It is time to move beyond individual-level policy recommendations, and implement wide-ranging changes to the system that got us here in the first place. This will not only save lives in the short and medium term, but will also serve to create a better and healthier future for our children and grandchildren, something they most surely deserve. 

Linda Bauld, professor, Bruce and John Usher Chair in Public Health, University of Edinburgh and Director of the SPECTRUM Research Consortium 

Lauren Carters-White, research fellow, SPECTRUM Research Consortium, Usher Institute, University of Edinburgh

Caroline Cerny, Alliance Lead, Obesity Health Alliance (hosted by Diabetes UK)

References:

APPG on Obesity 2018 The Current Landscape of Obesity Services https://obesityappg.com/inquiries

Garde and S. Byrne 2021 ‘Combatting obesogenic commercial practices through the implementation of the best interests of the child principle’ in A. Garde and O. De Schutter (eds), Ending Childhood Obesity: A Challenge at the Crossroads of International Economic and Human Rights Law, chapter 10 (Edward Elgar Publishing). 

B.A. Swinburn et al. 1999. ‘Dissecting obesogenic environments: the development and application of a framework for identifying and prioritizing environmental interventions for obesity’ Preventive Medicine 29(6): 563-570 https://doi.org/10.1006/pmed.1999.0585 

B.A. Swinburn et al. 2019 ‘The Global Syndemic of Obesity, Undernutrition, and Climate Change: The Lancet Commission Report’ The Lancet 393(10173): 791-846 https://doi.org/10.1016/s0140-6736(18)32822-8

Wood et al 2021 ‘Market strategies used by processed food manufacturers to increase and consolidate their power: a systematic review and document analysis’ Global Health 17: https://doi.org/10.1186/s12992-021-00667-7

D.R. Theis and M. White 2021 ‘Is obesity policy in England fit for purpose? Analysis of government strategies and policies, 1992–2020’ The Milbank Quarterly 99(1): 126–70 https://doi.org/10.1111/1468-0009.12498

Dimbleby 2021 The National Food Strategy Independent Review: The Plan, p. 290 https://www.nationalfoodstrategy.org/wp-content/uploads/2021/07/National-Food-Strategy-The-Plan.pdf

Lacy-Nichols et al. 2020 ‘The politics of voluntary self-regulation: insights from the development and promotion of the Australian Beverages Council’s Commitment’ Public Health Nutr 23(3): 564–75 https://doi.org/10.1017/S1368980019002003

NHS Digital 2020 Statistics on Obesity, Physical Activity and Diet, England, 2020 https://digital.nhs.uk/data-and-information/publications/statistical/statistics-on-obesity-physical-activity-and-diet/england-2020

Tatlow-Golden and A. Garde 2020 ‘Digital food marketing to children: exploitation, surveillance and rights violations’ Global Food Security 27: 100423 https://doi.org/10.1016/j.gfs.2020.100423

Lang and M. Heasman 2016 Food Wars (London: Routledge)

Smoking Kills: A White Paper on Tobacco. The Stationary Office https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/260754/4177.pdf

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Thus opens Perilous Medicine: The Struggle to Protect Healthcare from the Violence of War, a major new book on healthcare in armed conflict from Leonard Rubenstein, destined to become a landmark in its field. When I first met Len—I was a little wet behind the ears—he worked for Physicians for Human Rights US. Unbeknownst to him he became something of an inspiration for me, a gentle, witty, self-deprecating authority. He is now at Johns Hopkins, and Perilous Medicine reads like a summation of a lifetime’s experience, much of it hands on, at the interface between healthcare, human rights, and conflict. 

The backbone of this sobering, deeply humane book is a series of case studies—accounts of the targeting or politically motivated corruption and misuse of healthcare during times of conflict. Many of the places the book visits have become bywords for inhumanity, places of bitter, often enduring hostility or calamitous political failure. In Chechnya, a Russian Republic between the Black and Caspian seas, we see summary Russian executions of Chechnyan men in their hospital beds, of the Russian hunt for the “bandit doctor,” Kassan Baiev, whose “crime” was seeking to save the lives of the horrifically injured, Russian or Chechnyan. At one point, following the Chechnyan retreat from the Russian bombardment of Grozny, Baiev operated for three days solid. Twice he fainted from exhaustion. “I cut through so much bone,” he wrote, “that the teeth at the centre of my hacksaw blade became dull.” 

When the Islamic State of Iraq and the Levant, better known in the west as ISIS, began to accrue territory, it faced a challenge familiar to all “successful” insurrections: how do you provide services to the populations under your control? The approach to healthcare was brutal: ISIS demanded its own fighters were prioritised; civilian wounded were charged exorbitant fees; hospitals were emptied of the sick to make room for ISIS wounded; doctors were compelled to treat—and prioritise—ISIS fighters. Omar Amouri, an orthopaedic surgeon, was forced to treat ISIS fighters for two and a half years before escaping to Kurdistan.

At times in Perilous Medicine the entire science and enterprise of medicine feels under existential attack. In 2018-19, during an Ebola outbreak, the Democratic Republic of the Congo saw “the most sustained and dramatic instance in memory of violence directed against well-funded and globally coordinated efforts to control a major outbreak of a deadly infectious disease.” Before shooting Richard Valery Mouzoko Kiboung, a Cameroonian epidemiologist working in a hospital in Butembo, close to the Ugandan border, his killers told him that Ebola did not exist in the DRC. 

Perilous Medicine chooses its case studies carefully. Not only are they accounts of healthcare and its professionals under attack, each example reveals different dimensions of the contemporary threat to international humanitarian law (IHL). For each case study is also an account of a certain kind of failure—a failure by one or other combatant to show even residual respect for the laws hammered out in response to the limitless suffering of war waged without restraint. 

For as long as there have been recorded wars, there has been dispute about whether morality has any part in it. As Michael Walzer writes in Just and Unjust Wars, there have always been those who claim that warfare stands outside—or beneath—morality: inter arma silent leges: in times of war the law is silent. But as Walzer also argues, the language we use to talk about war is saturated with moral meaning. We talk of cowardice and bravery, savagery and restraint, necessity and atrocity. The words come naturally to us. 

Perilous Medicine opens with an account of a more recent version of this dispute. On the one hand, Henry Dunant, whose experience of slaughter at the battle of Solferino, Lombardy, sparked the development of the Geneva Conventions. On the other Prussian-born writer and soldier Francis Lieber, who thought war a form of moral energy essential to a country’s “moral progress.” While Dunant argued for restraint, Lieber believed the exigencies of war permitted far more. Although not amoral—Lieber supported some restraint—in his view whatever was “necessary” to the speediest conclusion of war was justified. Only acts unnecessary to that end were prohibited.

In theory, and on paper, Dunant’s view prevailed. The Geneva Conventions and their several Protocols are the core of IHL. But while Dunant prevailed morally, the merciless pursuit of military goals, irrespective of any constraining rule or injunction, continues to disfigure modern conflict. Perilous Medicine takes us to Syria and the deliberate targeting of health services and personnel by Assad’s regime and its Russian allies; to Yemen and the relentless Saudi assault on hospitals, clinics, and civilian sanitation networks, resulting in the largest Cholera outbreak on record; to Myanmar and the Tatmadaw—Myanmar’s military—attacks on health workers serving intensely vulnerable minority communities; to Israel/Palestine and the “obstruction” of vital health services to the Palestinian people by the Israel Defence Forces. All these violations of IHL in some way rationalised by security or “military necessity.”

Perilous Medicine is an important and necessary book. Partly this is to do with the precision and thoroughness of its account of violations of health-related IHL. But also because it deliberately asks an urgent question. Although it is unlikely that there was ever “a golden age” of warfare, where restraint prevailed in pursuit of just military goals, it can nonetheless feel as if we are sliding back into barbarism. The Balkan Wars, waged in the continent that first conceived of the Geneva Conventions—and spearheaded the contemporary human rights movement—felt like a watershed. Since then, particularly in the wars disfiguring the greater Middle East, conflict rages without apparent restraint. So how are we to respond? Perilous Medicine is clear that political will—the expenditure of political capital by major powers—is vital. So too is continued agitation by civil society—public opinion can matter, even to apparently hardened regimes. But for BMJ readers, a critical “untapped” resource is the medical community. “With some notable exceptions,” Len writes:

“…health worker constituencies have rarely made protection of health care a priority domestically, where it is most needed. They could lobby governments, tell the stories of the risks to health care, and solicit support from the public, organize their members, and express solidarity with those who practice in dangerous, overwhelming circumstances.”

Exceptions include the Turkish Medical Association, and, I would argue, the Norwegian Medical Association along with one of my employers, the British Medical Association. For those committed to the concept of just war, and to the constraints and protections laid out in the Geneva Conventions, these are clearly difficult times. As Len Rubenstein writes, the appeal of overwhelming and indiscriminate force is again in ascendance. But this is not the time to despair. As Len writes, although countering this brutality will take a supreme effort “the costs in suffering and death are too great not to try.”

Julian Sheather is a writer and ethicist

Competing interests: none declared.

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At 7 am on 3 September 2021, Doctors for Extinction Rebellion (XR) gathered at JP Morgan’s Canary Wharf headquarters. The group consisted of more than 50 doctors, nurses, allied health professionals, and students. They had gathered to deliver an urgent public health message—namely, to stop new investments into fossil fuels. Dressed in scrubs, they lay on the pavement under a banner that read “Cause of death: fossil fuel finance,” symbolising the deaths caused by fossil fuel investment. Some sprayed the words “CODE RED” with chalk paint, echoing the recently published IPCC report, which declared a code red for humanity. Their voices could be heard addressing the bank with a letter of concern, which they tried to deliver to its CEO, Jamie Dimon. Before long they were forcibly removed from outside the bank by the Metropolitan Police and private security guards. Six were unable to be carried off as they had superglued their hands to the pavement and planters outside the building. They remained there for three and a half hours, no longer visible to the public as steel barriers were erected around them, hiding the inconvenient truth of their message. Juliette Brown, a consultant psychiatrist, was among them: “I’m involved because my patients are being affected by air pollution and extreme weather. It’s now abundantly clear that if we go on investing in fossil fuels, we’ll see more destruction, disease, despair and death. Governments, banks and corporations have shown themselves unwilling to act on their promises. As a doctor I feel a duty to act on the evidence. So while it’s absurd that we have to risk arrest, we’ll continue to do this until the fossil fuel era is over and we have saved as many lives as we possibly can.”

The evidence is irrefutable; the climate and ecological emergency is the greatest health crisis of our time and is driven by burning fossil fuels. Although they are aware of this, many major banks continue to provide the corporate finance that drives exploitative and extractive fossil fuel projects. JP Morgan is a leading investor in fossil fuel projects among the big banks, having funded $317bn since the Paris Agreement came into force in 2016. As is the case for many companies, its rhetoric on climate change does not match its actions. Despite acknowledging that achieving net zero emissions by 2050 is the benchmark among policymakers, its climate strategy is based on a model that aims for net zero by 2070; a woefully inadequate target. The banking industry are risking the lives of people worldwide for its own profit and need to be held to account. 

Doctors for XR are part of the wider movement of Extinction Rebellion (XR), which uses non-violent direct action to demand urgent action to avert the climate and ecological emergency. The group’s members have three demands: that the UK government tells the truth about the scale of the emergency; that it commits to zero carbon emissions by 2025; and that it agrees to a binding citizens’ assembly to devise policies to tackle the crisis. It is worth dwelling on this third demand—when faced with a complex case in the NHS, we gather a multidisciplinary team of experts to help the patient navigate decisions about their treatment. The same is true for citizens’ assemblies, except here, experts on the climate and ecological emergency enable citizens to vote on recommendations. Assembly members are randomly selected, similar to jury service, to reflect a range of demographics from across the country. This process avoids structural inequality and ensures that the interests of vulnerable communities are considered. It can empower nations to make informed decisions democratically, and enables politicians to enact rapid change.

XR’s focus has recently expanded from raising public awareness to lobbying against the worst corporations and most indefensible government projects. Money Rebellion was launched, seeking to expose the deep causal link between the climate emergency and the economy, and demanding economic systems that safeguard life. XR demands system change; it avoids blaming individuals, acknowledging that we live in a toxic system. It prioritises a regenerative culture. XR is a decentralised, autonomous group that actively break down hierarchies, ensuring equitable participation.

Doctors for XR joined the XR movement in 2019, citing the “duties of a doctor” laid out in the GMC’s Good Medical Practice guidelines as a reason to act: 

“You must take prompt action if you think that patient safety, dignity, or comfort may be compromised.” The same message was stated by the Nursing and Midwifery Council and other regulatory bodies. Medical activism has historically supported social reform—a US physician, Donald Berwick, believes that doctors have a moral obligation to deal with the inherent inequalities in our system: “When the fabric of communities on which health depends is torn, then healers are called to mend it.” This goes for climate justice as well as the intersecting issues of race, gender, and class. 

Working with other groups including Health Declares and PsychDeclares, Doctors for XR lobbied several royal colleges to divest from fossil fuels and to make declarations of a climate and ecological emergency. Doctors for XR successfully campaigned to have an oil and gas conference barred from the Royal College of GPs in London. Other notable actions include organising for health warning labels to be stuck on 20,000 petrol pumps and staging a mock climate inquest at Parliament Square. Doctors for XR have undertaken civil disobedience as a last resort. Dozens of health professionals have been arrested while protesting peacefully. Their actions have received public support from the World Health Organization’s  director general, Tedros Ghebreyesus, and the editor of The Lancet, Richard Horton. 

XR has been protesting for two years, during which the debate around the environment has transformed. XR’s controversial tactics of civil disobedience have proved divisive. Yet the cause was never to win public affection—the group notes that historically, proponents of social change were disliked by wider society—and it has propelled the climate crisis up the agenda. It was after a series of XR protests that the UK Parliament became the first to declare a climate emergency. A recent UN poll found that belief in the climate emergency was highest in the UK and Italy, both at 81%. 

Since the recent demonstration, Doctors for XR have been returning to Canary Wharf in small groups in ongoing protest. 

Amelia Cussans, psychiatry trainee, London @DrAmeliaCussans @PsychDeclares

Ali Rowe, former mental health nurse, Bristol @DoctorsXr

Conflicts of interest: none declared. 

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