Representativeness in health research studies: an audit of Greater Manchester Clinical Research Network studies between 2016 and 2021

Abstract

BackgroundThere are increasing concerns that participants in health research in the UK are not representative of the UK population, risking widening health inequities. However, detailed information on the magnitude of the problem is limited. Therefore, we evaluated if the health research conducted in the Greater Manchester region was broadly representative of its diverse population.MethodsWe conducted an audit of all health research studies conducted exclusively in Greater Manchester, using data from a national research network. Two researchers selected studies that were (1) an interventional or observational study of a health outcome; (2) ‘closed’ for recruitment between May 2016 and May 2021 and (3) human research. They extracted study information (dates, contacts, sample recruited, clinical speciality). Participant characteristics were sourced from published and unpublished manuscripts and requested directly from principal investigators and named study contacts.Data were extracted, summarised and compared to the Greater Manchester population for the following metrics: ethnicity, sex, age, deprivation and smoking status. A weighted mean age estimate was calculated to account for variation in age reporting. Too few studies provided patient-level deprivation data so, using the area code of the recruitment site, the area level multiple deprivation, health deprivation and disability index and decile was derived. These data were geo-mapped using QGIS 3.26.ResultsOverall, 145/153 (95%) studies met inclusion criteria and participant information was sourced for 85/145 (59%) studies, representing 21,797 participants. Participant information was incomplete for all metrics. Where ethnicity (N = 10,259) data were available and compared to Greater Manchester estimates there was evidence that ethnic minorities were under-represented (6% versus 16%). Most of the recruitment occurred in central Manchester (50%) and with NHS hospital settings (74%).ConclusionsGreater Manchester health research in 2016–2021 was centralised and under-represented ethnic minorities. We could not report which ethnic minority group was least represented because sourcing detailed participant information was challenging. Recommendations to improve the reporting of key participant characteristics with which to monitor representativeness in health research are discussed.