A new report that captures the development of public involvement in health and social care research in England through the eyes of 29 individuals who were part of the INVOLVE Coordinating Centre is published today on the International PPI Network (IPPIN) website. Beginning in 2021, former INVOLVE members, staff, and other interested parties came together to discuss how best to capture learnings from INVOLVE’s long and influential tenure. Simon Denegri, David Evans, Marisha Palm, and Sophie Staniszewska organised a witness seminar, which is a method used to collect a rich and nuanced oral history of an event or topic. They worked with Bec Hanley, Derek Stewart, and others to develop a list of potential witnesses with a variety of perspectives and invite those witnesses to participate in one of two witness seminar sessions. The first session focused on the conception and formation of INVOLVE in the 1990s into the early 2000s, and the second session covered the early 2010s to 2020 when INVOLVE ended.
The resulting report includes an introduction to the process, the full transcripts, an outline of key themes that surfaced during the witness seminar, ways to find out more about INVOLVE, brief biographies of those who took part and a chronology of events. The transcripts provide a rich and complex view of the development, evolution, and dissolution of INVOLVE. Witnesses were encouraged to share their perspectives with the goal of capturing a full and honest account an organisation that evolved significantly across its more than 20 years. Successes, failures, and the loss of a community are all included in the witness accounts. Themes related to the importance of the historical perspective; INVOLVE as a social movement; the importance of INVOLVE’s ways of working; its activity as a quiet disruptor; its role in the development of evidence, knowledge, and learning; its infrastructure, processes, and systems; and the loss of INVOLVE as an internationally recognised centre of excellence, came out of the witness seminar.
David Evans says,
“INVOLVE developed a unique and innovative approach to public involvement in research and we hope this witness seminar report will help share the learning with all who want to develop meaningful involvement in research.”
Download the report here: