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 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 research provides a starting point for understanding and correcting the mismatch. The aim is to make sure that more patients in health research come from areas where the disease is most common.
What’s the issue?
Research is fundamental to high-quality health care. It provides evidence for making policy and testing treatments. It can often only happen if patients volunteer to take part. Patients also benefit from taking part in research. They may learn more about their condition, try a new treatment, or be more closely monitored than normal.
Between April 2019 and March 2020, 732,176 people in England took part in health research. But there are concerns that research is not happening in places where the burden of disease is the highest. For example, some illnesses and disorders are more common among older people, who may be more likely to live in rural and coastal areas. By contrast, research tends to cluster around major hospitals and universities.
Researchers wanted to find out whether the recruitment of patients to health research in England takes place in areas where the prevalence of disease is highest.
The NIHR Clinical Research Network (CRN) supports health research in England and gathers data on recruitment in the 15 Local Clinical Research Networks (LCRNs). This study covered patients recruited to health research between 2013 and 2018. Many (but not all) were recruited into research funded by the NIHR.
In parallel, the team mapped the prevalence of long-term conditions (including diabetes and mental health) in the 15 LCRNs, and also in the 195 Clinical Commissioning Groups (CCGs) within the LCRNs. The researchers ranked LCRNs and CCGs according to the levels of each disease in their area.
Researchers then put the two sets of data together. They looked at the variation in recruitment by area, and compared this to the data on disease.
Rates of recruitment to health research varied substantially across England. The general pattern was that recruitment was not aligned with the prevalence of disease. In other words, the higher the prevalence of disease in a particular area, the lower the rate of recruitment in that area. There was little change in this pattern over time.
In order to match recruitment to disease prevalence across the research network, studies would have to recruit 12% of patients from a different area. This represents about 90,000 people.
Why is this important?
This study is unique in comparing the rates of research recruitment to disease burden, and providing an estimate of the scale of the mismatch.
There are several reasons why it is important to recruit volunteers from the places and populations where disease is most common. These include:
- making the benefits of taking part in research available to all
- making it easier for researchers to find people able and willing to take part
- ensuring local risk factors for disease and health outcomes can be taken into account
- ensuring that treatments and interventions are tested in different local contexts.
There were some limitations in the data. For example, the study considered large areas covered by LCRNs. But a low level of disease across a whole area could mask ‘hot spots’ of high prevalence within it. Despite this, the findings offer a clear baseline for future efforts to correct the mismatch between recruitment and disease.
These 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.
You may be interested to read
The full paper: Bower P, and others. Is health research undertaken where the burden of disease is greatest? Observational study of geographical inequalities in recruitment to research in England 2013–2018. BMC Medicine. 2020;18:133
NIHR Be Part of Research, where you can find out about health and social care research opportunities across the UK
NIHR INCLUDE Project guidance on improving inclusion of under-served groups in clinical research
A blog on improving clinical trials by keeping the focus on the people taking part
This research was funded by the NIHR Clinical Research Network.