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.

中文翻译：

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反映社区利益相关者不同观点的肺癌研究议程：SEED 方法的过程和结果。

简单的英语摘要 需要一种方法，让非专业人士和其他利益相关者（例如患者和医疗保健提供者）参与制定对他们及其社区重要的健康问题的研究问题。让利益相关者参与有助于确保资金用于解决他们关注的研究。SEED 方法让利益相关者参与一个系统的过程，以探索健康问题和提出研究问题。不同的利益相关者群体在三个层面参与：作为领导整个过程的合作者，作为利用他们的专业知识提出问题的参与者，以及作为提供关于健康主题的额外观点的顾问。我们使用 SEED 方法让来自不同社会经济和专业背景的 61 名利益相关者参与，提出有关肺癌结局的研究问题。参与者包括癌症患者和护理人员、医疗保健提供者和管理人员，以及来自弗吉尼亚农村社区的政策制定者。他们开发了因果模型，将影响肺癌结果的因素以及它们之间的关系图解。他们使用这些模型来开发优先研究问题。这些问题反映了参与者的不同观点，并针对与肺癌结果相关的不同领域的调查，包括获得护理、支持系统、健康的社会决定因素和护理质量。参与者感到为执行项目任务做好了充分准备，因为他们有机会回顾肺癌信息，接受因果模型和研究问题开发培训，并参加促进小组活动。SEED 方法可用于各种环境，并应用于利益相关者感兴趣的任何健康主题。摘要背景 利益相关者参与健康研究的优先排序有助于确保资金用于反映其关注和需求的研究。利益相关者参与问题制定和优先排序 (SEED) 方法是一种多利益相关者方法，它使用社区参与和因果模型的原则来制定反映患者、临床医生和其他社区利益相关者优先事项的健康研究问题。我们对 SEED 方法进行了演示，以生成有关肺癌结果的研究问题，并评估过程、结果、生成反映不同利益相关者观点的研究议程的方法的有效性和有效性。方法 SEED 方法在三个层次上让社区成员参与进来：协作、参与和咨询。从 2015 年 11 月到 2016 年 7 月，我们在弗吉尼亚州的一个农村社区开展了一个示范项目，该社区的肺癌结果存在显着差异。一个社区研究团队领导了该项目，并选择了三个不同的利益相关者群体（主题群体，TG）参与健康问题分析、因果建模和研究问题开发。我们评估了利益相关者参与的质量，并比较了 TG 因果模型和研究问题，以评估该方法产生的利益相关者观点的多样性。结果由此产生的研究议程就广泛的主题提出了问题，包括获得护理、支持系统和应对机制、健康的社会决定因素和护理质量如何影响肺癌的结果。由于技术培训和促进的建模和问题开发活动是 SEED 方法的一部分，参与者感到为他们被要求执行的任务做好了充分的准备。主题组开发的因果模型和研究问题反映了利益相关者的不同观点。结论 SEED 方法有可能针对各种健康相关主题生成以利益相关者为中心的相关研究议程，并为持续的研究参与创造社区能力。支持系统和应对机制、健康的社会决定因素和护理质量会影响肺癌的预后。由于技术培训和促进的建模和问题开发活动是 SEED 方法的一部分，参与者感到为他们被要求执行的任务做好了充分的准备。主题组开发的因果模型和研究问题反映了利益相关者的不同观点。结论 SEED 方法有可能针对各种健康相关主题生成以利益相关者为中心的相关研究议程，并为持续的研究参与创造社区能力。支持系统和应对机制、健康的社会决定因素和护理质量会影响肺癌的预后。由于技术培训和促进的建模和问题开发活动是 SEED 方法的一部分，参与者感到为他们被要求执行的任务做好了充分的准备。主题组开发的因果模型和研究问题反映了利益相关者的不同观点。结论 SEED 方法有可能针对各种健康相关主题生成以利益相关者为中心的相关研究议程，并为持续的研究参与创造社区能力。由于技术培训和促进的建模和问题开发活动是 SEED 方法的一部分，参与者感到为他们被要求执行的任务做好了充分的准备。主题组开发的因果模型和研究问题反映了利益相关者的不同观点。结论 SEED 方法有可能针对各种健康相关主题生成以利益相关者为中心的相关研究议程，并为持续的研究参与创造社区能力。由于技术培训和促进的建模和问题开发活动是 SEED 方法的一部分，参与者感到为他们被要求执行的任务做好了充分的准备。主题组开发的因果模型和研究问题反映了利益相关者的不同观点。结论 SEED 方法有可能针对各种健康相关主题生成以利益相关者为中心的相关研究议程，并为持续的研究参与创造社区能力。