SPSE

Patient and Stakeholder Engagement in Stroke Research (SPSE)

Background / Rationale

Involving stroke patients in clinical research through Patient and Stakeholder Engagement (PSE), also known as Patient and Public Involvement (PPI), safeguards that studies are patient-centered, enhancing feasibility, credibility, and ethical conduct. This approach leads to more appropriate and effective outcomes, as well as improved trust and communication between researchers and the patient community. Additionally, it improves the overall quality of studies. Given that stroke is the world's second leading cause of death and of long-term disability, and its prevalence is increasing as populations age, we will conduct a multi-method study focusing on stroke as an index condition. The European Stroke Action Plan emphasizes the value of linking research results with patient populations. As with other conditions, the scope of SPSE research is unclear, necessitating comprehensive studies to identify barriers, gaps, needs, and opportunities regarding PSE. 

Objectives

The study seeks to develop recommendations for Stroke Patients and Stakeholders Engagement (SPSE) to be utilized by biomedical scientists working with stroke patients and stakeholders.

The specific objectives are

1. Explore Evidence: Clarify key concepts, definitions, and components, and identify models, strategies, indicators, or frameworks for establishing SPSE

2. Identify Challenges and Facilitating Factors: Understand the challenges, facilitating factors and motivations in implementing SPSE during the design, conduct, and dissemination phases of stroke research at the Berlin Institute of Health (BIH) Charité

3. Develop Recommendations: Use findings from previous stages to create evidence-informed, comprehensive, and applied recommendations for SPSE

Methodology

This qualitative multi-methods study encompasses a scoping review using a five-step approach outlined by Arksey and O’Malley, following the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines. Subsequently, a Qualitative Content Analysis is conducted utilizing purposeful sampling. The results from these two parts are then integrated using expert panels.

Expected Results / Implications / Perspectives

The recommendations will support patient engagement activities across universities, research centers, and networks, contributing to the strategic vision "Rethinking Health-Charité 2030". While our focus is on stroke, the findings will be relevant to other diseases as well. The evidence-informed, comprehensive, and applied recommendations from this project will enhance our understanding of how SPSE works and how to successfully approach and enhance patient engagement. The results of this project will support patient engagement activities at other universities, research centers, and research networks. This aligns with the strategy "Rethinking Health-Charité 2030".

Concretely, the results of this study will 

• enhance understanding of engaging diverse stroke-related stakeholders in research
• inform operable methods, models, and strategies for SPSE throughout various research phases
• improve the understanding and participation of all stakeholders in biomedical stroke research, fostering a more inclusive and effective research environment