Service user reflections on the impact of  involvement in research

Abstract

Background Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement. This commentary, written by two members of a hospital-based patient panel and their coordinator for its work, describes how we coproduced instruments to evaluate the impact and effectiveness of our involvement. We present here the results, including our quantitative and qualitative findings, of this patient led evaluation and reflect on how our involvement has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel. Methods Existing impact frameworks and guidelines were reviewed. Members co-produced and piloted qualitative questionnaires to identify values associated with patient and public involvement (PPI) from both a researcher and panel member perspective, and collected quantitative metrics to provide descriptive statistics on the type of involvement and activities. Members also produced a comments slip to provide contemporaneous feedback after each meeting. Results The panel has reviewed 36 research projects for the Therapeutics and Palliative Care Directorate drawn from speech and language therapy, physiotherapy, occupational therapy, dietetics, podiatry, palliative care services and chaplaincy. Some of the main results of our involvement have been the development of grant applications and making written information more understandable for research participants. Examples of how the Panel made a difference included providing an effective forum for debate by providing practical suggestions to improve research design and identifying potential issues that may not have occurred to the researcher. The panel has had an impact outside of meetings both within the context in which it operates and on the individuals involved. Examples included: Influencing the Directorate research agenda, sharing resources with other groups, developing research relationships, and enabling member participation in different roles and settings. Discussion Embedding ourselves within the Directorate research infrastructure has enabled us to adapt to organisational change and actively contribute to the research strategy. There is greater scope for involvement in areas of cost effectiveness and economic evaluation. Increasing member contributions and networking with other groups provides added value as well as cross fertilisation of ideas as part of our widening impact. Conclusion Evaluating the impact of our involvement has improved our understanding of what aspects of involvement work best for the panel and the researchers who attend our meetings, and in the different settings that we work in. It has helped us to focus on how we need to develop to maximise our resources going forward.