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

Autor: Rafie CL; 1Department of Human Nutrition, Foods and Exercise, Virginia Polytechnic Institute and State University, 321 Wallace Hall (0430), 295 West Campus Drive, Blacksburg, Virginia 24061 USA., Zimmerman EB; 2Center on Society and Health, Virginia Commonwealth University, 830 East Main St., Suite 5032, P.O. Box 980212, Richmond, Virginia 23298-0159 USA., Moser DE; Martinsville, Virginia 24112 USA., Cook S; 4Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, 2525 West End Ave, Nashville, TN 37203 USA., Zarghami F; 1Department of Human Nutrition, Foods and Exercise, Virginia Polytechnic Institute and State University, 321 Wallace Hall (0430), 295 West Campus Drive, Blacksburg, Virginia 24061 USA.
Jazyk: angličtina
Zdroj: Research involvement and engagement [Res Involv Engagem] 2019 Jan 11; Vol. 5, pp. 3. Date of Electronic Publication: 2019 Jan 11 (Print Publication: 2019).
DOI: 10.1186/s40900-018-0134-y
Abstrakt: Plain English Summary: There 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: Background Engagement of stakeholders in prioritization of health research can help ensure that funding is directed to research that reflects their concerns and needs. The Stakeholder Engagement in quEstion Development and Prioritization (SEED) Method is a multi-stakeholder methodology that uses principles of community engagement and causal modeling to develop health research questions that reflect the priorities of patients, clinicians, and other community stakeholders. We conducted a demonstration of the SEED Method to generate research questions on lung cancer outcomes, and to evaluate the process, outcomes, and effectiveness of the method for generating a research agenda that reflects diverse stakeholder perspectives. Methods The SEED Method engages community members at three levels: collaboration, participation, and consultation. We conducted a demonstration project from November, 2015 to July, 2016, in a rural Virginia community that was experiencing a significant disparity in lung cancer outcomes. A community research team led the project and selected three distinct stakeholder groups (Topic groups, TG) for participatory engagement in analysis of the health issue, causal modeling, and research question development. We evaluated the quality of stakeholder engagement and compared TG causal models and research questions to evaluate the diversity of stakeholder perspectives resulting from the methodology. Results The resulting research agenda poses questions on how a broad range of topics including access to care, support systems and coping mechanisms, social determinants of health, and quality of care impacts lung cancer outcomes. Participants felt well prepared for the tasks they were asked to perform due to the technical trainings and facilitated modeling and question development activities that are part of the SEED Method. The causal models and research questions developed by the Topic Groups reflected the diverse perspectives of the stakeholders. Conclusions The SEED Method has the potential to generate relevant stakeholder-centered research agendas on a variety of health-related topics, and to create community capacity for sustained research engagement.
Competing Interests: This research was approved by the Virginia Tech Institutional Review Board. IRB Approval # 15–748. All participants provided written informed consent.Not applicable.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Databáze: MEDLINE
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