Title : Enhancing stroke research through patient and stakeholder engagement: Insights from a scoping review and qualitative study
Abstract:
Background: In stroke research, engaging patients and other stakeholders (such as caregivers and clinicians) is increasingly recognized as essential for ensuring that studies are patient-centered, ethical, and impactful. However, best practices for implementing such engagement remain unclear. We conducted a scoping review and a qualitative study to examine existing evidence on stroke patient and stakeholder engagement (SPSE) and to gather stakeholder perspectives on its challenges and facilitators.
Methods: We performed a systematic scoping review following Arksey and O’Malley’s framework and PRISMA-ScR guidelines. We searched PubMed, Web of Science, and Embase (up to February 2024) for English-language publications on patient or public involvement in stroke research. Eligible studies were charted and analyzed for engagement approaches, contexts, and outcomes. In parallel, we carried out a qualitative study involving semi-structured interviews with stroke survivors, caregivers, researchers, and health professionals. Using directed content analysis, we identified key themes regarding motivations, barriers, and best practices for SPSE.
Results: The scoping review included 21 relevant publications. Stakeholder engagement was most commonly reported during the study design phase and often involved qualitative research methods. Reported benefits of engagement included improved study relevance, feasibility, and trust between researchers and patients. However, practices varied widely, and researchers noted challenges such as inconsistent terminology, lack of frameworks, resource constraints, and difficulties integrating stakeholders throughout the research process. The qualitative interviews echoed many of these findings. Participants affirmed that involving patients leads to more meaningful outcomes and better communication. They highlighted barriers like limited institutional support, unclear roles, and time constraints, while also suggesting facilitators such as early involvement of patients in planning, training and support for all partners, and institutional guidelines to foster engagement.
Conclusion: Combining evidence from literature with insights from stakeholders provides a comprehensive understanding of how to enhance patient and stakeholder engagement in stroke research. Our study underscores the need for clear frameworks and supportive resources to integrate patient voices at all research stages. Based on these findings, we developed practical recommendations to help researchers and institutions overcome barriers and embed effective patient and stakeholder engagement in future stroke studies.
Patient/Public Contribution: Stroke survivors and caregivers were actively involved in this research as interview participants, sharing their experiences and priorities. Their input was integral to interpreting the results and formulating the recommended strategies for improving patient and public involvement in stroke research.
