Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study

Abstract

BackgroundReciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall.AimsThe aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback.MethodsAn explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process.ResultsResearchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted.ConclusionThis study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research.

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

“…Researchers may not always have been aware of the extent to which feedback could be provided to PRPs, or have had the time needed to provide such feedback. These findings align with recent work to clarify the kinds of feedback needed by public contributors to research [48]. These issues could also be addressed, in collaboration with PRPs, at the project planning stage.…”

Evaluating patient and public involvement in research

“…Evaluation need not be complicated to be useful. Simple feedback between patients and researchers can improve the involvement process, spur mutual learning, and change researchers’ mindsets and future practice 2526…”

Public involvement in the dissemination of the North West Coast Household Health Survey: Experiences and lessons of co‐producing research together

“…In addition, public advisers from the HHS expressed a need for academics to be more transparent with the objectives of meetings and individual activities to avoid any confusion about their benefits or contributions. This has been also picked up in a recent study on public involvement across England, suggesting that researchers need to provide more feedback to public advisers . Therefore, we will be clearer about the objectives of meetings and activities from the beginning prior to the activity, so that public advisers can decide whether this is relevant to them.…”

“…This is also corroborated by a recently published model on public involvement in dementia research, 17 England, suggesting that researchers need to provide more feedback to public advisers. 18 Therefore, we will be clearer about the objectives of meetings and activities from the beginning prior to the activity, so that public advisers can decide whether this is relevant to them.…”