Abstract
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.BackgroundEngagement 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.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.
Highlights
Engagement of stakeholders in prioritization of health research can help ensure that funding is directed to research that reflects their concerns and needs
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 Stakeholder Engagement in quEstion Development and Prioritization (SEED) Method
The SEED (Stakeholder Engagement in quEstion Development and Prioritization) Method was developed to fill a gap in stakeholder engagement strategies that are community driven and use participatory methods to engage clinician and patient stakeholders in health research question development and prioritization. [8, 9] We conducted a demonstration of the SEED Method with community stakeholders in a rural community in southern Virginia to develop a research agenda relevant to lung cancer outcomes
Summary
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 (Continued on page). End users of health research are increasingly being engaged throughout the research process Involvement of those impacted by health issues in the identification and prioritization of research topics allows inclusion of their unique experiential understanding and ensures that research priorities reflect their concerns. [8, 9] We conducted a demonstration of the SEED Method with community stakeholders in a rural community in southern Virginia to develop a research agenda relevant to lung cancer outcomes. A cancer needs assessment conducted by the authors (CR and DM) in this community in 2014 identified a disparity in lung cancer mortality as a significant health issue. [10] Lung cancer is the third most commonly diagnosed cancer and the leading cause of cancer death among both men and women of all races and ethnicities in the United States. [11] The national age-adjusted lung cancer death rate in 2017 was 44.7, compared to 45.5 in Virginia, and 73.1 in the target community for the SEED demonstration. [12] The 5-year survival rate remains very low at only 18.1%. [13] Racial and socioeconomic lung cancer disparities exist and involve complex, interconnected influences of the living environment, behaviors, sociocultural factors, and biology of individuals. [14] The SEED Method is designed to consider the multiplicity of influences on health outcomes using a socio-ecological approach and was conducted as a follow-up to the findings of disparate lung cancer outcomes in the community
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