RESUMO
BACKGROUND: Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorganized and eliminated INVOLVE, an internationally recognised group that had played a central role in public involvement in the UK since 1996. Its remit was subsumed within a new center tasked with public involvement, participant recruitment, and evidence dissemination. A year later, in 2021, interested parties came together to discuss the evolution of INVOLVE and consider how to retain some of the important historical details and learn lessons from its long and important tenure. METHODS: We hosted a witness seminar in 2022 that was one of four work groups and brought together public involvement leaders that had been part of the conception, development, and evolution of INVOLVE between 1995 and 2020. Witness seminars are a method used to capture the complexity and nuance of historical events or initiatives. They support critical thinking and reflection rather than simple commemoration. We identified those who had played a role in INVOLVE history, ensuring diversity of perspective, and invited them to attend and speak at the seminar. This took place during two sessions where witnesses provided their recollections and participated in a facilitated discussion. RESULTS: Across the two online sessions, 29 witnesses attended and contributed thoughts and recollections. Two authors (SS, MP) identified six themes that were described in the witness seminar report and have been discussed, elaborated, and illustrated with witness quotations. These are: the importance of historical perspective; INVOLVE as a social movement; how INVOLVE worked (e.g. its hospitality, kindness, and inclusivity); INVOLVE as a quiet disruptor; public involvement evidence, knowledge, and learning; the infrastructure, processes, and systems developed by INVOLVE; and the demise and loss of INVOLVE as an internationally recognized center of excellence. DISCUSSION: The authors of this commentary reflected on the discussions that took place during the witness seminar and the themes that emerged, and share six broad learnings for future practice; (1) it is important to create and nurture public involvement communities of practice; (2) collaborative ways of working support open discussion amongst diverse groups; (3) be aware of the tensions between activism and being part of the establishment; (4) continued efforts should be made to build an evidence base for public involvement practice; (5) there are both benefits and drawbacks to having a centralized organization leading public involvement; and (6) support for public involvement in research requires a fit-for-purpose tendering process that embeds robust public involvement.
BACKGROUND: Involving members of the public in research can improve the way that research is planned, managed, and shared. Between 1996 and 2020 an organization in the UK called INVOLVE had an important role in public involvement in research. When INVOLVE lost this role, some people who had been part of the group got together to think about how to save some of the important information and learn lessons from the time it had existed. METHODS: A meeting was arranged where people who have been part of an event or topic get together to share what it was like for them. This was called a witness seminar and it took place online over two days in 2022. Twenty-nine people attended and spoke about their experiences. RESULTS: The people who attended the witness seminar had different ideas about why INVOLVE was important and agree that it is now missed. People talked about INVOLVE as part of a certain time in history and said it was a social movement. They felt that it was kind and caring, brought together lots of people with different ideas, and supported changes in thinking. INVOLVE had a focus on evidence and learning and created structure and systems to support public involvement in research. Losing INVOLVE was difficult because a lot of people within the UK and beyond looked to them as a leader in public involvement. We share quotes on all of these topics. DISCUSSION: In this article we looked at how people remembered INVOLVE and thought about what information could be saved. We share lessons that will support thinking about the future of public involvement. These include things like how important it is for there to be spaces for people to come together to learn, discuss, and share, and that we have more work to do to understand public involvement and fully include it in research.
