The numbers of patients who take part in health research varies across England. But overall, health research does not take place in areas where the burden of disease is highest.
A new study from NIHR Evidence found that areas with the highest burden of disease have the lowest numbers of patients taking part in research. This means that diseases which are more common among deprived communities are being studied in healthier populations. This matters because findings from healthier populations may not hold true in communities which face greater challenges to health and well-being. It is also unjust as publicly-funded research should be accessible to all.
The data suggest that researchers need to think more closely about where they conduct their studies.
The study will allow research leaders and policy makers to monitor any changes over time and assess whether progress is being made in aligning research activity to disease burden.
There is more work to do in engaging with people most in need of health research. We do not know enough about how recruitment methods could be improved to reach new populations and there is a need to explore this further. The NIHR has projects underway that aim to improve our recruitment methods.
Join Dementia Research is a nationwide service which enables anyone over 18 years of age, with or without dementia, and careers, to volunteers to take part in research studies. As part of a volunteers registration, they are asked to provide information that allows the system to ‘match’ them to potentially appropriate research. While the main objectives of the service are obvious i.e. a) support volunteers to have opportunities to participate in research they may not otherwise discover b) help researchers to rapidly and effectively recruit to studies. Join Dementia Research has a long-term ambition to steer and encourage researchers to undertake research in the geographical areas where there are people wanting to participate. Using volunteer registration data, the service hopes to demonstrate to researchers places and populations that are under-researched.
If you are currently performing a study feasibility review, or starting to recruit to a study, contact the Join Dementia Research team, who can perform a free feasibility reviews to advise on locations and populations that have less opportunities to join studies (giving you less competition, and a larger pool of people).