UK makes diversity a requirement for funding research

Guideline requires scientists to consider inclusion at every stage of research; experts urge scientific journals to do the same

Editorial staff

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The National Institute for Health and Care Research (NIHR), a UK research funding agency, recently determined that inclusion will be an essential requirement for the approval of research funding. The requirement applies to all stages of research, from formulating the research question to the publication of results.

Historically, scientific research has frequently ignored vulnerable groups, reinforcing inequalities in access to healthcare, according to the agency’s website. As a consequence, certain segments of the population are not represented in research, which prevents the development and testing of new services and treatments for society as a whole.

Impact on health equity

This lack of representation was highlighted in a study published in the journal BMC Medicine, which analyzed how the geographical distribution of participants affects research results. The study compared participant recruitment data collected between 2013 and 2018 in England against the prevalence of chronic diseases, such as asthma, heart disease, and cancer, as well as mental illnesses and diabetes.

The researchers observed a significant variation in recruitment rates in different regions, revealing a discrepancy between disease prevalence and the number of participants from those locations in clinical trials.

A matter of justice

The research found that, in 15 local clinical research networks, about 12% of recruitment should have been redistributed to make it proportional to the prevalence of the diseases studied. Furthermore, it found that in 25% of the locations, recruitment was a quarter of the national average, while in 10% it was double.

The researchers highlight that science plays a crucial role in reducing inequalities, since it contributes to improving the quality of healthcare services and to the development of treatments and evidence-based public policies.

One of the problems with the lack of representation is that research that prioritizes populations with better health conditions may not be generalizable—and many applied studies assess interventions whose impact varies in accordance with the region.

“As a matter of justice, publicly funded research should be accessible to all, so that the benefits are distributed equitably,” say the authors of the article.

The authors also point out that the specialization and structure of research institutions influence inclusion. Some institutions tend to focus on populations that are easier to recruit, and geographic variation in recruitment suggests that the main factor is regional research capacity, and not necessarily the profile of the population being studied.

Inclusive publication

The theme of health inequalities has been discussed in Royal Society of Medicine conferences.

“We are 51% of the population, but little research is done with women of reproductive age to develop new treatments. It’s absurd.”
— Lesley Regan, gynecologist and obstetrician at Imperial College London

Another issue is the exclusion of the elderly. “It is unacceptable to exclude older people because of an arbitrary age limit,” says Lucy Chappell, director of NIHR. “What is the scientific basis for excluding people over 80?” she asked.

One proposed solution to ensure greater diversity in scientific research is to make inclusion a mandatory criterion for publishing articles in scientific journals.

John James, director of the Sickle Cell Society, argued that editors should reject research that does not represent population diversity. “Many Black patients ask me how they can know whether people like them participated in clinical trials and whether the treatment will be effective and safe for them,” says James.

The adoption of stricter inclusion criteria for scientific research could be an essential step forward in ensuring that scientific advances benefit everyone—and not just a privileged segment of the population.

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