Abstract
Plain English summaryThe aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and on the planning of an effect study of this intervention.The SWG included five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant. The SWG met four times during the year where the intervention was developed. Data material for the present evaluation study comprises meeting documents, transcriptions of interviews with two patient representatives and three researchers from the SWG, and the primary investigator’s field notes.The collaboration between patient representatives and researchers informed both the intervention and the research planning and was rewarding for the involved participants. The well-structured organization of the collaboration had a positive impact on the outcome. In addition, clear goals and clarification of expectations were important. Challenges were encountered in keeping continuity between meetings and carrying out homework as intended. It was crucial for the collaboration that patient representatives had specific knowledge, interest and motivation for the project.Involving patient representatives in the research process heightened the relevancy of the research and the quality of its contents. The SWG gave patient representatives and researchers a better mutual understanding. Overall, the conclusion is that the benefits obtained by involving patient representatives exceeds the additional costs this involves.BackgroundThe aim of the paper is to present experiences of researchers collaborating with patients in a shared working group comprising patient representatives and researchers. Experiences are deduced from the evaluation of the work in the working group, which collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and the planning of a randomized controlled trial that investigates the effect of this intervention.MethodsFive patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant participated in the shared working group. The shared working group met four times during the year the intervention was developed. Data material for the present evaluation study was collected from meeting documents, transcriptions of interviews with two patient representatives and three researchers from the shared working group, and the primary investigator’s field notes. The data analysis was guided by Sandelowski’s qualitative description strategy.ResultsThe collaboration between patient representatives and researchers informed the intervention and the research planning and was rewarding for the involved participants. The well-structured organization of the collaboration had a positive impact on the outcome. Also, clear goals and clarification of expectations were important. Challenges were encountered in ensuring continuity between meetings and carrying out homework as intended. It was considered crucial for the collaboration to recruit patient representatives with specific knowledge, interest and motivation for the project. The direct costs related to the shared working group, including meals, transportation and salary for the research assistant, were small. However, the indirect costs in terms of time spent on planning patient-involving elements of, organizing meetings and evaluation were substantial and demanded a significant amount of extra work for the primary investigator.ConclusionInvolving patients in the research process heightened the relevancy of the research and the quality of the research contents. The shared working group influenced both patient representatives and researchers and gave them a better mutual understanding. Overall, the conclusion is that the benefits obtained by involving patients exceed the additional costs related to patient involvement.
Highlights
Meeting 2 Evaluation of interviews and discussion of program materialMeeting 3 Test and evaluation of program draftVideo recordrings with shared working group (SWG) membersMeeting 4 Discussion of feasibility study and evaluation with the possibility of keeping additional project material collected
The internet-delivered Mindfulness-Based Cognitive Therapy (I-Mindfulness-Based Cognitive Therapy (MBCT)) intervention was modified to fit the cancer population and aimed at reducing symptoms of depression, anxiety, and stress among women treated for breast cancer and men treated for prostate cancer
The SWG consisted of five patient representatives, two men treated for prostate cancer and three women treated for breast cancer; four researchers, and a research assistant, all women
Summary
Meeting 2 Evaluation of interviews and discussion of program materialMeeting 3 Test and evaluation of program draftVideo recordrings with SWG membersMeeting 4 Discussion of feasibility study and evaluation with the possibility of keeping additional project material collected. This paper presents experiences and reflections from a shared working group (SWG) of patient representatives and researchers and is reported according to the revised Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist [1]. The English national advisory group, INVOLVE, defines PPI in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” [3]. This approach contrasts with previous approaches to research and treatment where healthcare professionals considered themselves to be the only true experts for making decisions. Challenges in PPI in research are that PPI procedures are time-consuming and costly; it requires a certain measure of project flexibility to enable change and avoid a tokenistic involvement of patients [5]
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