Deep lessons from ‘The Deep End’ – a community perspective on the barriers and facilitators to inclusive research.

Problem

Research studies are rarely representative of the UK population, in terms of minority representation and the inclusion of people from socio-economically deprived backgrounds. This is even more problematic when those same populations are the ones most affected by the disease in question. Often referred to as ‘hard to reach’, the reality may be that they are ‘easier to ignore’. We explored the barriers and facilitators to inclusive research, from the perspective of local communities.

Approach

Two focus groups were undertaken to explore these issues:‘The Deep End’ CRN is a group of 9 GP practises in areas of Sheffield with higher-than-average deprivation, and ethnic minority populations. The Deep End patient and public inclusion group is made of patients from these practises, who have been supported to be able to give valuable feedback to researchers, particularly around project design. Focus group one was with this group (6 participants).A rapid analysis by 3 researchers was undertaken, to identify the main themes from the focus group. These were then presented to focus group two, which was made up of local community leaders (4 participants), and focused on how we could address the issues identified in the first focus group.Another rapid analysis was undertaken by 3 researchers, in addition to a literature review identifying 6 papers which presented theories relevant to this topic. A framework was created from the rapid analysis themes and theoretical papers. In-depth analysis was then undertaken according to this framework.

Findings

Our findings highlighted many problematic issues at the interface between communities and academic institutions. These were both historical (e.g. the colonisation of the curriculum) and current (e.g. unsuitable recruitment methods). Further, our findings suggest that building trust between communities and institutions is essential in ensuring inclusive research. This needs to be long term and at a societal level (e.g. building reciprocal relationships between academic institutions and community groups), as well as project specific (e.g. clarity of research processes). Feeding into the central issue, are the core values of researchers (e.g. cultural competence) and the motivations of the public in becoming involved in research (representing, or being representative of, their communities).

Consequences

Our findings indicate that individual researchers and research teams can take action to increase the chances of research opportunities reaching a diverse range of contributors and participants. These actions should be based on core values, including ‘cultural competence’. Changes at a societal and institutional level will help to break down barriers between communities and institutions, ensuring that changes in the way we work become embedded. Co-production of research with community groups may be an effective model.