Enhancing Patient and Stakeholder Engagement in Stroke Research: Advancing Evidence-Informed, Comprehensive, and AppliedRecommendations

• Applicant: Professor Dr. Hamidreza Khankeh
• Subject Area: Clinical Neurology; Neurosurgery and Neuroradiology ; Public Health, Healthcare Research, Social and Occupational Medicine
• Term: since 2023
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 539333509

Patient and stakeholder engagement (PSE) involves active collaboration among patients, relatives, caregivers, and researchers throughout the study. It ensures that stakeholder experiences and contributions influence research decisions, considering their diverse backgrounds, perspectives, and expertise. Despite the growing understanding of the importance of stakeholder participation, PSE is still relatively underdeveloped in Germany compared to countries like England or the Netherlands. The project focuses on stroke as an "index indication" due to its global impact on mortality and disability, but the results will have broader relevance beyond this indication. Patient, relative, and caregiver involvement in stroke research is currently limited in Germany, making it crucial to explore barriers and bottlenecks and propose potential solutions. The project is divided into three work packages. The first work package consists of a comprehensive scoping review to present the current practices of PSE in stroke, clarify essential concepts and definitions, and develop models and techniques for establishing PSE in stroke research. The second work package employs qualitative content analysis to investigate barriers, facilitators, and motivations for implementing PSE in stroke research. Building on the findings from the previous project phases, the third work package will develop evidence-based recommendations for PSE in stroke. The overarching goal of the project is to foster a collaborative culture among academics, patients, and stakeholders while providing a standardized method for patient involvement in clinical stroke studies. The affiliation with the QUEST Center for Responsible Research and the Center for Stroke Research Berlin ensure methodological support and access to the field for the project. The project's results will be disseminated to the academic community through publications, international conferences, forums, and the QUEST website. Additionally, the findings will facilitate future international PSE collaborations. In summary, the project aims to deliver evidence-based recommendations for patient participation in stroke research and enhance the understanding of PSE concepts by promoting stakeholder interaction.

• DFG Programme: WBP Position