More proactivity is needed in involving under-served groups in research trials, a new paper shows.
A paper recently published in Trials has shown that researchers need to take more proactive steps to ensure those from under-served groups are represented in research trials.
The study was led by researchers from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Greater Manchester (ARC-GM) and The University of Manchester, in collaboration with the developers of the INCLUDE Ethnicity Framework, NIHR ARC – East Midlands and the Centre for Ethnic Health Research.
It involved a survey of 182 researchers who held NIHR research grants between 2019 – 2021; with 15 of the respondents also taking part in an interview. All respondents were also asked to complete the INCLUDE Ethnicity Framework; which is an tool from NIHR and Trial Forge that aims to improve the applicability of trial evidence by asking a series of questions to encourage researchers developing trials to consider ethnicity in the design of their study.
Results indicate that although researchers recognised the importance of increasing the engagement and recruitment of under-served groups in trials, their knowledge, ability and commitment to making this happen varied.
It also showed that researchers generally considered the INCLUDE Ethnicity Framework as beneficial in raising awareness of the need to design trials to enable inclusion of people from under-served groups as trial participants.
Importantly, the study highlighted the need for researchers to consider the funding and time needed to ensure inclusive participant recruitment into trials; and for funders of research to enable this by actively encouraging trial teams to build inclusive strategies into funding applications.
Furthermore, the study described the importance of researchers taking proactive steps to involve relevant under-served groups in patient and community involvement and engagement activities.
To supplement the recent paper in Trials, the team have developed a guide for researchers to involve patient, public and community contributors in the INCLUDE Ethnicity Framework, which can be accessed from Trial Forge INCLUDE website here.
Dr Lydia Morris, University of Manchester and NIHR ARC-GM, who led this study said:
"One of the key findings that struck me was, while patient, public and community involvement and engagement (or patient, public, involvement) is undeniably essential for meaningfully involving and recruiting under-served groups, in some cases this was the only approach described.
Collaboration is key, but it seemed that this perspective could shift the focus away from other resource and structural changes that are required.
Furthermore it points to the need for diverse patient, public and community involvement and engagement groups so that under-served groups are truly represented."
Nasima Miah, Community Engagement Officer at the Centre for Ethnic Health Research, who collaborated on this study said:
“I thoroughly enjoyed working on the Top Tips for researchers with Lydia on INCLUDE Project. This work has allowed us to engage community PPI Representatives and convey the experiences of underserved groups. The Top Tips are great for researchers as a guide from community Patient Public Representatives.”
Find out more here.
Read the paper in full: Morris, L., Dumville, J., Treweek, S. et al. Evaluating a tool to improve engagement and recruitment of under-served groups in trials. Trials 23, 867 (2022).
Published 26/10/2022