Aging, Community and Health Research Unit, School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada; McMaster Institute for Research on Aging | Collaborative for Health and Aging, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada; Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA.
Ann Epidemiol. 2021 Jul;59:37-43. doi: 10.1016/j.annepidem.2021.04.009. Epub 2021 Apr 21.
The American College of Epidemiology (ACE) held its 2019 Annual Meeting in Pasadena, California, September 7-10 with a theme of "Real-World Epidemiologic Evidence in Policy and Practice". The ACE Ethics Committee hosted a symposium session at the annual meeting on the ethical challenges of stakeholder engagement in the health research setting. The purpose of this paper is to further examine the design and conduct of stakeholder engagement and reflect on the ethical challenges with the goal of offering best practices and identifying areas where future guidance, critical reflection and teaching may be needed.
Three speakers with diverse affiliations were selected to present on the opportunities and ethical challenges of stakeholder engagement in epidemiology and community health. Dr. K Coleman presented an "Overview of Stakeholder-Engaged Research Strategies" and "Engaging Stakeholders in Retrospective Observational Studies"; Dr. J Salerno presented on "An Ethical Perspective to Optimize Engagement Strategies"; and Ms. F Jones presented on the "Structure of Community-Partnered Participatory Research".
Three main insights were identified: (1) the need for a unifying framework of ethical principles for the implementation of stakeholder engagement, (2) an expanded set of research activities for stakeholders aligned with their engagement in epidemiology studies, and (3) strengths of a community-based partnership model of stakeholder engagement in community health, known as community-partnered participatory research (CPPR).
There is a need to broaden the dialogue and understanding of stakeholder engagement for researchers who are increasingly faced with the ethical challenges of implementing approaches and strategies to engage patients, communities, policy makers and the public as stakeholders. To address current challenges, we offered a unifying framework to guide best practices of stakeholder engagement by integrating the core ethical principles of research conduct involving human subjects with the guiding principles of patient engagement. We shared 2 model overviews of implementing stakeholder engagement: (1) a 4-staged model when implementing stakeholder engagement using an epidemiological study design, (2) a stakeholder engagement model rooted in authentic academic-community partnerships, known as community-partnered participatory research (CPPR) to address depression disparities. By critically reflecting on stakeholder engagement across disciplines and appraising the opportunities and ethical challenges of implementing stakeholder engagement in health research, we have provided insights on how to operationalize, conduct and implement stakeholder engagement and have contributed to moving this important field forward.
美国流行病学学会（ACE）于 2019 年 9 月 7 日至 10 日在加利福尼亚州帕萨迪纳举行了其 2019 年度会议，会议主题为“政策与实践中的真实世界流行病学证据”。ACE 伦理委员会在年会上举办了一次研讨会，讨论了在健康研究环境中利益相关者参与所面临的伦理挑战。本文旨在进一步探讨利益相关者参与的设计和实施，并反思伦理挑战，以期提供最佳实践并确定未来需要指导、批判性反思和教学的领域。
选择了三位具有不同背景的演讲者，就流行病学和社区卫生中的利益相关者参与的机会和伦理挑战进行演讲。Coleman 博士介绍了“利益相关者参与研究策略概述”和“在回顾性观察性研究中吸引利益相关者”；Salerno 博士介绍了“优化参与策略的伦理视角”；Jones 女士介绍了“社区伙伴参与式研究的结构”。
确定了三个主要观点：（1）需要为实施利益相关者参与制定统一的伦理原则框架，（2）为与流行病学研究中的利益相关者相匹配的一整套扩展的研究活动，以及（3）社区伙伴参与式研究（CPPR）中社区为基础的利益相关者伙伴关系模式的优势。
对于越来越多地面临实施方法和策略以吸引患者、社区、政策制定者和公众作为利益相关者的研究人员来说，需要扩大利益相关者参与的对话和理解。为了解决当前的挑战，我们提出了一个统一的框架，通过将涉及人类受试者的研究行为的核心伦理原则与患者参与的指导原则相结合，指导利益相关者参与的最佳实践。我们分享了实施利益相关者参与的 2 个模型概述：（1）使用流行病学研究设计实施利益相关者参与的 4 阶段模型，（2）基于真实学术-社区伙伴关系的利益相关者参与模型，称为社区伙伴参与式研究（CPPR），以解决抑郁差异问题。通过跨学科批判性地反思利益相关者参与，并评估在健康研究中实施利益相关者参与的机会和伦理挑战，我们提供了关于如何实施、进行和实施利益相关者参与的见解，并为推动这一重要领域的发展做出了贡献。
