Abstract TP111: Attitudes and Perceptions Regarding Patient Engagement and Knowledge Translation in Stroke Research: Results From the PERSPECT Qualitative Study

Abstract

Background: Patient engagement and knowledge translation are increasingly recognized as critical components of stroke research. However, it is unclear how these components are currently perceived by interested parties. Methods: The PERSPECT (Priorities and Expectations of Researchers, Donors, Patients, and the Public Regarding the Funding and Conduct of Stroke Research) qualitative study involved in-depth, semi-structured interviews with patients, members of the general public, researchers, and donors, including board members of funding organizations and philanthropists. Participants were asked to discuss their thoughts about the role of patient and public engagement in stroke research and on the translation/dissemination of research findings. Collected data were analyzed through constant comparison and theme identification, followed by grounded theory content analysis. Results: Forty-one interviews were completed (11 with researchers and 10 for each patients, public and donors). An important theme that emerged was a need to re-evaluate and broaden conventional definitions of “expertise” in the context of selecting grant application review panels, recognizing the value of lived experience alongside that of education and professional experience. Whereas participants identified an important role for patient voices in guiding research direction and design; concerns were raised about the limited public awareness and understanding of medical research, which may hinder meaningful, advantageous involvement in the research process, as well as trust in evidence-based recommendations. In this regard, lay participants highlighted media-driven misinformation and a lack of credible lay-language resources as impeding effective dissemination of research findings. Conclusions: All four participant groups recognized the importance of knowledge end-users being engaged in research from its early stages, including decision-making about funding allocation. Impactful involvement seems however hindered by knowledge and communication gaps between the research and lay communities. Our results underscore the importance of efforts to make ongoing research and study findings more visible, accessible, and comprehensible.