Background: PCORI recognizes the need to engage the public in research to increase accountability, relevancy, and transparency while generating new insights. Currently, selection of research topics is usually done by researchers or sponsors alone. Efforts to include stakeholders are hampered by lack of willingness or understanding on the part of both researchers and stakeholders and lack of methodological standards. Few frameworks have been developed for collaborative generation of research questions. We propose a new method for engaging stakeholders. The SEED (Stakeholder Engagement in question Development) method is a combination collaborative/consultative engagement model that provides meaningful participation from patients and other stakeholders in the development of causal models predicting health outcomes and development and prioritization of research questions.
Objectives: The specific aims are to (1) conduct a demonstration of the SEED method for participatory generation of causal models and research questions, and (2) ensure replicability and scalability through project documentation, evaluation, and preparation of tools for future research. The long-term objective is to provide a framework for future patient-centered outcomes research (PCOR) researchers to develop more robust causal models and to collaboratively generate research questions relevant to stakeholders.
Methods: This qualitative demonstration will be conducted in two sites in Virginia: a rural site with a community health partnership and an urban site with an active community-based participatory research team. The research teams in these sites will specify the research topic, conduct interviews and complete a stakeholder identification matrix to identify relevant stakeholders, recruit stakeholder participants, collect data from diverse stakeholders via focus groups, and conduct a participatory evaluation. Topic groups of stakeholders will participate in facilitated model building, question development, and prioritization exercises. The research teams will review and edit the conceptual models, finalize research questions, and disseminate results. The method is designed to be used by a broad range of research teams within a limited time frame.
Anticipated Impact: Participation has the benefit of generating research that is consistent with the concerns, needs, and values of stakeholders. Those with diverse viewpoints can bring a range of perspectives and priorities, as well as a greater level of understanding about the processes by which social and environmental factors affect health-related behaviors, decision making, and health outcomes. We believe the SEED method will be ideally suited to generate PCOR-focused research agendas on a variety of health-related topics.