Research Funds Fund Bias: Inequalities in Research Funding Distribution and Its Repercussions on the Ill
Written By Angharad Bridges
Since 2004, funding delegated to medical research has only increased. In 2022, the total amount of money spent on medical research in the UK reached £5 billion, and this money was sourced from governing bodies, charities, and institutions across the country. Yet, despite the breadth of sources of funding, can we say that the public is equally and proportionally served? There is ample evidence of glaring inequalities across the UK and internationally in terms of what research is funded, which institutions are selected and which populations are most deserving, leaving frustrated researchers and patients in their wake. Whilst some might argue that these feelings are inevitable due to the limited funding available, these inequalities speak volumes about bias, stigma, and how our society puts a price on illness.
Location, Location, Location
It has already been established that there is an increased quality of health services where there is an increased concentration of wealth. The Office for National Statistics reported that, in 2021, one third of all smoking adults in England and just under a third in Wales live in the two most deprived deciles. Alcohol Change UK reported that people on low incomes are more likely to experience alcohol-related illness or mortality - despite drinking less than those on higher incomes on average - due to diet and smoking habits, as well as more dangerous drinking patterns. In 2018, the BBC reported that “deprived areas have five times more fast-food outlets than affluent areas”. Therefore, we know that people in lower-income parts of the UK are more likely to have poorer diets and engage in activities such as alcohol abuse and smoking. These compounding factors ultimately lead to poorer health outcomes, meaning that research should be concentrated in these areas, right?
Unfortunately, that is far from the case. The Northern Health Science Alliance reported that in 2022, the entire North UK received £405 million in medical research funding, in comparison to a staggering £1.69 billion that is spent on London, Oxford and Cambridge. On average, one person from the Greater South East would receive £68.58 in research funding, whereas one person from the North would only receive £25.72. The disparity between the absolute richest and poorest is quite shocking; Cambridgeshire in the South receives approximately £337.85 per person, whereas Tees Valley in the North East receives £11.34. A 50 year long study carried out by the University of York which showed that since 1965, mortality rates in the North have always been at least 15% higher than in the South, equating to around 38,000 more deaths in the North each year. Given that health outcomes are poorer in the North, there is no good reason for the North to miss out on vital medical research funding which would go on to save lives, improve health outcomes and increase productivity, especially considering that there is no shortage of world-leading institutes in the region.
I’m Big, You’re Little
Children (people under 18 years of age) make up approximately 19% of the population in the UK, yet only 6% of NIH funding is spent on paediatric research. To learn more about this discrepancy I contacted Professor Christian Hedrich, a paediatric rheumatologist and researcher, from the University of Liverpool. About this inequality, he noted that “if you ask why children don’t get as much research funding, the reasoning they give is that paediatrics receives the same amount as endocrinology. There is no recognition that this is inappropriate.”
The indifference displayed by research funding bodies may be because children do not vote – as such, they have little political power in driving change and being seen as a priority. Furthermore, Professor Hedrich said that research bodies may be reluctant to fund paediatric research because they think that research in adult medicine can be applied equally to paediatric medicine. Essentially, new standards of care derived from adult rheumatology research can be delivered to paediatric rheumatology, because they are treating the same condition. This is the logic. However, Professor Hedrich pointed out, for example, that earlier systemic lupus erythematosus onset (i.e. in children) is often more severe than later onset, so the standards of care should be different. “The molecular pathophysiology is different between children and adults for the same disease. Without adequate research, treatments won’t work as well in children as they do in adults.” It’s a no-brainer, then, that research should meet the needs of paediatric disease proportionally to adult disease.
It's All Your Fault
In 2023, the previous Sunak government developed a “major conditions strategy”, which was a plan to improve healthcare outcomes for six major disease domains. These include cancer, dementia, chronic respiratory disease, cardiovascular disease, mental ill health, and musculoskeletal disorders. These conditions were highlighted because 60% of mortality and morbidity in the UK is related to at least one of these conditions, and patients often experience several of these at once. In essence, they are the big killers and disablers of the West.
The burden of disease for these conditions is so great, yet the disparity in research output between the major conditions is striking. I searched the PubMed database for publications from the last 5 years for each of the conditions, and unsurprisingly, cancer research had the most publications at 1,320,861 results. Cardiovascular disease and related conditions came second with 966,035 results. However, one of the major conditions had such a low research output that I thought I’d searched the database incorrectly - chronic respiratory disease had a measly 113,219 results.
Lung diseases are the third biggest cause of death in the UK after cancer and cardiovascular diseases according to the NHS. It is difficult to compare the impact of chronic respiratory disease and cardiovascular disease or cancer because they are often interlinked. Nevertheless, chronic respiratory disease is desperately underfunded – in 2023, just 1.8% of medical research funding in the UK was spent on it. That’s about £47 million. It’s not just research that’s being neglected – around 1 million people in the UK are diagnosed with COPD, but there are thought to be around 2 million people who are suffering undiagnosed.
The lack of research attention is likely explained by biases. Similarly to other conditions, chronic respiratory diseases affect the poorest in the UK. But that doesn’t explain the poor research output, as most conditions affect the poorest communities in the UK. In 2015, the Washington Post reported that “we tend to underfund things where we blame the victim”. Indeed, chronic respiratory illnesses are heavily associated with smoking, and because of that the solution seems simple – stop people smoking. Our society has developed a disdain not only for smoking, but also for smokers. Two years ago, a friend shared with me an opinion that has stuck with me ever since: “people who smoke are stupid”. This may be a common societal standpoint, but is it fair? After all, we know that social determinants of health are deeply rooted in inequalities, and society should know better than to blame sufferers for their suffering. Additionally, not all respiratory illnesses are caused by destructive lifestyles. Unfortunately, research funding bodies are not immune to bias. I cannot say whether this stigma carries through all research funding decisions, but it may be the case that funding for chronic respiratory disease favours prevention policies over research publications. Whilst preventative measures should by no means be completely cast aside in favour of pouring money into interventional studies, preventative measures themselves need research funding. To understand the best way to target those at risk and meet their psychological and social needs, we need to carry out - you guessed it - research.
The Greater Good
Imagine this: there is a very unstable hot air balloon with two people inside. If both people remained in the hot air balloon, it would plummet and both people would die, but if only one remained, then the hot air balloon could land safely. One was a 14-year-old and another was a 70-year-old. They both weigh the same amount – throwing either of them out will ensure that the other one lives. If you presented this dilemma to several people, chances are that most of them would choose to spare the 14-year-old, who has a whole life ahead of them. Now consider a 14-year-old with a chronic but non-life-threatening illness, who has a lowered but reasonable quality of life, compared to a 70-year-old who is suffering from a life-threatening condition. You have enough resources to cure only one. People’s responses will no longer be as unanimous as the first scenario.
I asked Professor Hedrich about his personal experiences with obtaining research funding as a paediatric rheumatologist. He told me that one large research body outside of the UK told him; “This is a non-lethal disease, so it is a low priority”. Research funding distribution generally follows the principle of utilitarianism – that we should maximise happiness for the greatest number of people. This principle raises questions about funding for rare conditions, but that is not my focus. Research funding bodies, and by extension, society, define “maximising happiness” as saving lives.
Over the past 20 or so years, disability adjusted life years (DALY) has become a valuable metric for quantifying the impact of disease on an individual and a population. Despite this, funding bodies like the one to which Professor Hedrich applied for a grant still value the lethality of a disease as the most important metric for research priority. Is this acceptable? After all, the 14-year-old with the chronic illness can be managed and still live a life, whereas the 70-year-old will lose their priceless life. But, the 14-year-old’s treatment may have a significant impact on their education, job attainment, mood and productivity throughout their life, and as with the hot air balloon scenario, they have “more of a life to live”. Why, then, do research bodies, and society, define saving a life as the most valuable metric for prioritising research?
There is very little research that links medical research with how we value life. From a sociological perspective, this societal bias could be due to the impact of religion on culture. Although the UK is no longer a Christian country, religious values run deep within our culture. Indeed, the human race is a very religious one, with about 6 billion people whose values echo seemingly immortal sentiments such as “Thou shalt not kill” and similar. We cannot ignore the fact that religion, amongst other factors, may have influenced our preference for “quantity” of life rather than quality of life. This bias may also be because we view death as more permanent than disability – we cannot reverse a death, but it is possible, however unlikely, that a chronic but manageable illness could one day be cured.
But how can we increase the “quantity” of life for children and those in the most deprived areas if we don’t fund life-saving research? From the statistics and personal experiences, we can see that biases in research funding decisions are too complex to conclude as a single principle, such as “they don’t care about quality of life” or “they don’t care about the poor”. They are an amalgamation of social stigmas and power imbalances that have persisted for longer than any of us will live. Nevertheless, medical research is an area of health which can be used to target these imbalances, but neither cure nor improved management can be delivered if research is never adequately funded.
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