A lung cancer research agenda that reflects the diverse perspectives of community stakeholders: process and outcomes of the SEED method.

plain english summaryThere is a need for methods that engage lay people and other stakeholders, such as patients and healthcare providers, in developing research questions about health issues important to them and their communities. Involving stakeholders helps ensure that funding goes to research that addresses their concerns. The SEED Method engages stakeholders in a systematic process to explore health issues and develop research questions. Diverse groups of stakeholders participate at three levels: as collaborators that lead the process throughout, as participants who use their expertise to develop the questions, and as consultants who provide additional perspectives about the health topic. We used the SEED Method to engage 61 stakeholders from different socioeconomic and professional backgrounds to create research questions on lung cancer outcomes. Participants included cancer patients and caregivers, healthcare providers and administrators, and policymakers from a rural Virginia community. They developed causal models that diagrammed factors that influence lung cancer outcomes and the relationships between them. They used these models to develop priority research questions. The questions reflect the participants' diverse perspectives and address different areas of inquiry related to lung cancer outcomes, including access to care, support systems, social determinants of health, and quality of care. Participants felt well prepared to perform the project tasks because they had the opportunity to review lung cancer information, receive causal model and research question development training, and participate in facilitated group activities. The SEED Method can be used in a variety of settings and applied to any health topic of interest to stakeholders. ABSTRACT: