Patient and public involvement (PPI) in research is increasingly encouraged as a means of improving its validity and relevance. Although gaining momentum, the implementation of PPI in research in Switzerland remains recent. Our aim was to establish a PPI model for cancer research adapted to the local context that will assist researchers to apply PPI approaches within their projects.
Two semi-directed focus groups were conducted with 10 local key informants including patient representatives (2), oncology healthcare professionals (3), PPI experts (2), experts in patient-reported measures (2), and health managers (1). A deductive thematic approach was used to identify benefits, limitations and facilitators of establishing a PPI model in cancer research in the local context. In addition, we identified established frameworks in research and/or cancer research to analyze the main concepts and elements to be considered.
Consensus was reached on the benefits of involving patients in research, allowing for more specific, relevant, and comprehensive studies. Participants also identified limiting factors such as the lack of PPI culture in healthcare research or the need for a paradigm shift at different levels. Among facilitators for the success and long-term sustainability of PPI were awareness of the resources, capacities of the research organization and capabilities of the patients, the need for PPI training for both researchers and patients, and the recognition of patient’s contributions. Nine different frameworks from seven countries were retained for further analysis. Main elements identified related to the goals to be achieved (why?), the knowledge that patients can contribute (what?), and the types and degree of patients' involvement (who & how?).
The resulting SCCL-PPI model is multidimensional, comprising the stages of research, different levels and types of involvement, capabilities required from patients and capacities of the research group/organization. It is important for researchers to make a careful assessment of each of these dimensions. We chose to depict it using the Rubik’s cube to reflect the importance of adaptability of a PPI approach to each individual research project.
Clinical trial identification
Legal entity responsible for the study
Institute of Higher Education and Research in Healthcare – IUFRS-UNIL-CHUV.
ISREC Foundation; Bryn Turner-Samuels Foundation.
All authors have declared no conflicts of interest.