Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2020 May 18;18(1):133.
doi: 10.1186/s12916-020-01555-4.

Is health research undertaken where the burden of disease is greatest? Observational study of geographical inequalities in recruitment to research in England 2013-2018

Peter Bower  1 , Christos Grigoroglou  2 , Laura Anselmi  2 , Evangelos Kontopantelis  2 , Matthew Sutton  2 , Mark Ashworth  3 , Philip Evans  4   5 , Stephen Lock  6 , Stephen Smye  7 , Kathryn Abel  8
Affiliations
Observational Study

Is health research undertaken where the burden of disease is greatest? Observational study of geographical inequalities in recruitment to research in England 2013-2018

Peter Bower et al. BMC Med. .

Abstract

Background: Research is fundamental to high-quality care, but concerns have been raised about whether health research is conducted in the populations most affected by high disease prevalence. Geographical distribution of research activity is important for many reasons. Recruitment is a major barrier to research delivery, and undertaking recruitment in areas of high prevalence could be more efficient. Regional variability exists in risk factors and outcomes, so research done in healthier populations may not generalise. Much applied health research evaluates interventions, and their impact may vary by context (including geography). Finally, fairness dictates that publically funded research should be accessible to all, so that benefits of participating can be fairly distributed. We explored whether recruitment of patients to health research is aligned with disease prevalence in England.

Methods: We measured disease prevalence using the Quality and Outcomes Framework in England (total long-term conditions, mental health and diabetes). We measured research activity using data from the NIHR Clinical Research Network. We presented descriptive data on geographical variation in recruitment rates. We explored associations between the recruitment rate and disease prevalence rate. We calculated the share of patient recruitment that would need to be redistributed to align recruitment with prevalence. We assessed whether associations between recruitment rate and disease prevalence varied between conditions, and over time.

Results: There was significant geographical variation in recruitment rates. When areas were ranked by disease prevalence, recruitment was not aligned with prevalence, with disproportionately low recruitment in areas with higher prevalence of total long-term and mental health conditions. At the level of 15 local networks, analyses suggested that around 12% of current recruitment activity would need to be redistributed to align with disease prevalence. Overall, alignment showed little change over time, but there was variation in the trends over time in individual conditions.

Conclusions: Geographical variations in recruitment do not reflect the suitability of the population for research. Indicators should be developed to assess the fit between research and need, and to allow assessment of interventions among funders, researchers and patients to encourage closer alignment between research activity and burden.

Keywords: Equity; Recruitment; Research activity.

PubMed Disclaimer

Conflict of interest statement

EK, MA, SS, PE, KA and PB received grant and other funding from the NIHR Clinical Research Network. All other authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Calculation of the redistribution index
Fig. 2
Fig. 2
Geographical distribution of recruitment per 1000 people across 195 CCGs
Fig. 3
Fig. 3
Bar charts for CCGs or LCRNs ranked by prevalence of disease
Fig. 4
Fig. 4
Concentration curves for recruitment
See this image and copyright information in PMC

References

    1. Downing A, Morris EJA, Corrigan N, Sebag-Montefiore D, Finan PJ, Thomas JD, Chapman M, Hamilton R, Campbell H, Cameron D, et al. High hospital research participation and improved colorectal cancer survival outcomes: a population-based study. Gut. 2017;66(1):89. doi: 10.1136/gutjnl-2015-311308. - DOI - PMC - PubMed
    1. Boaz A, Hanney S, Jones T, Soper B. Does the engagement of clinicians and organisations in research improve healthcare performance: a three stage review. BMJ open. 2015;5(12):e009415. - PMC - PubMed
    1. Golsorkhi M, Steel R. Report of the patient research experience survey 2017/18. In: Clinical Research Network Coordinating Centre: NIHR; London 2018.
    1. McDonald A, Knight R, Campbell M, Entwistle V, Grant A, Cook J, Elbourne D, Francis D, Garcia J, Roberts I, et al. What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. Trials. 2006;7:9. - PMC - PubMed
    1. Fry A, Sudlow C, Adamska L, Allen NE, Doherty N, Collins R, Sprosen T, Littlejohns TJ. Comparison of sociodemographic and health-related characteristics of UK biobank participants with those of the general population. Am J Epidemiol. 2017;186(9):1026–1034. doi: 10.1093/aje/kwx246. - DOI - PMC - PubMed

Publication types