Service user reflections on the impact of involvement in research

PLAIN ENGLISH SUMMARY: Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hospital-based patient research panel and our coordinator have written this paper. Our panel covers a range of rehabilitation and palliative services. These services form the “Therapeutics and Palliative Care Directorate”. We describe how we worked collaboratively with hospital staff and co-produced questionnaires to evaluate the impact of our involvement. We compared the different perspectives of the researchers and panel members on our contribution to the research. We present evidence from these different standpoints, including how our panel made a difference. We found we needed to adapt how we collected the views of the researchers and our members to ensure it was meaningful to our group whilst delivering the wider objective of the hospital. A key finding has been how our involvement has extended into other groups, which has identified opportunities for sharing resources and experience, including areas such as cost effectiveness. Our two-person membership of a high level Board of Academics and Senior Clinicians, which oversees the research we contribute to, has resulted in our opinions influencing the heart of the Directorate’s research strategy. We have learned the importance of a flexible approach as the Directorate changes, and the demands on us grow. This will continue to help us share our own development, successes and experience and extend the benefits from working this way. 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 co-produced 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.