Is research done where the burden of disease is greatest? An observational study
Problem
A recent NIHR strategy review stated that ‘research activity should go to the populations who most need it, and we would like to encourage the best researchers… to undertake clinical and public health research in the areas of England with the greatest health needs’ The statement implies a significant problem, with research activity done with the wrong populations and in the wrong areas. Using existing data, we analysed the relationship between research activity and population health burden in England to assess the extent of the problem.
Approach
We used existing data on research activity and estimates of disease burden. For research activity, we drew on CRN Business Intelligence which provided recruitment figures in England, broken down by local networks and CCGs. For disease burden, we used 14 codes reflecting long-term conditions and calculated the total numbers of patients on each condition register in a general practice. We used descriptive analyses to explore the relationship between disease burden and research activity, and we mapped these relationships to assist in communicating the findings.
Findings
The overall results show that research activity (as defined by numbers of studies and participants) is reasonably but imperfectly correlated with disease burden.
Consequences
The data need careful interpretation, as there is no consensus on the strength of the relationship between research and burden that would merit concern. The initial findings would suggest that research delivery is related to population health need, but that there is potential room for improvement. These initial analyses can act as a stimulus to developments in this important area, including a broader understanding of what it means for research ‘to be conducted with and in the populations most affected’, the development of relevant indicators to assess the fit between research activity and burden, and ongoing assessment of policies to encourage a better fit.