Democratising health and social care research through long-term public involvement and engagement: a qualitative process evaluation of the Community Research and Engagement Network (CoREN)

Abstract

Background Interest in public involvement in UK health and social care research continues to grow, yet many initiatives are short-lived and offer public collaborators little meaningful influence. Established in 2019 within the NIHR Applied Research Collaboration North West Coast (ARC NWC), the Community Research and Engagement Network (CoREN) was created to provide a sustained platform for co-production of health and social care research. This article reports a theory-informed qualitative process evaluation of the CoREN, examining its progress towards democratic, long-term co-production and the factors that enable or impede it. Methods Methodologically, a qualitative, relational approach informed by deliberative democratic theory was used. Data were collected via semi-structured interviews with CoREN Leadership Group members (n=6) and affiliated researchers (n=4) and three focus groups with community members and partners (total n=17). Framework analysis was applied using a priori and inductive codes. Results Participants described the CoREN as a coordinating nexus that connects researchers and community organisations, brokers relationships and “plants seeds” that later grow into co-produced projects. Other key impacts included amplifying community voices in the research process, helping to equalise power dynamics in researcher-community relationships, and building research literacy and capacity within communities. Challenges included a lack of clarity regarding the CoREN’s role and structure, bureaucratic inertia, and difficulties in including a representative range of diverse and less privileged communities across the region. Conclusions The CoREN model demonstrates the promise of sustained, non-project-bound engagement networks as a means of strengthening democratic participation in research and building capacity for future co-production. Sustained investment, ongoing feedback and evaluation, and a commitment to overcoming structural barriers to participation are needed to ensure that progress towards equitable community-led research is maintained. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-026-00897-2. Abs1 This article reports the results of an evaluation of the Community Research and Engagement Network (CoREN), an initiative started in 2019 in the North West of England, aiming to give local people, voluntary and community organisations, practitioners and researchers a longer-term way to work together on health and social care research. To understand the CoREN’s impacts and how it works in practice, we spoke to six members of its Leadership Group, four academic researchers who had worked with the CoREN, and held three focus groups with community members with experience of the CoREN. Participants told us the CoREN helps to link up partners who would not otherwise meet, bridging the gap between academic work and real-world problems, and “planting seeds” that later grow into joint research projects. Other key impacts included boosting the voices of communities in research, helping to balance power in research teams between academics and members of the public, and increasing community understanding of research. However, the network also faces challenges. Some participants were confused about its exact role and felt working with it could be slow or formal. Although it has made progress in including a range of diverse communities in the region, there remains room for improvement. Overall, the CoREN shows how a long-term network can support greater patient and public involvement in research. Further investment, clearer communication about its role, and stronger communication with under-represented groups would help it maintain progress and reach its potential. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-026-00897-2. Abs2 plain-language-summary