Poger Jennifer M, Mayer Victoria, Duru Obidiugwu Kenrik, Nauman Beth, Holderness Heather, Warren Nate, Vasquez Carolina, Bibi Salma, Rasmussen-Torvik Laura J, Hosseinian Zahra, Shi Lizheng, Wallace Jamie, Goytia Crispin N, Horowitz Carol R, Kraschnewski Jennifer L
Department of Medicine, Penn State College of Medicine, Hershey, PA.
Department of Population Health Science and Policy.
Med Care. 2020 Jun;58 Suppl 6 Suppl 1(Suppl 6 1):S66-S74. doi: 10.1097/MLR.0000000000001264.
Stakeholders (ie, patients, policymakers, clinicians, advocacy groups, health system leaders, payers, and others) offer critical input at various stages in the research continuum, and their contributions are increasingly recognized as an important component of effective translational research. Natural experiments, in particular, may benefit from stakeholder feedback in addressing real-world issues and providing insight into future policy decisions, though best practices for the engagement of stakeholders in observational studies are limited in the literature.
The Natural Experiments for Translation in Diabetes 2.0 (NEXT-D2) network utilizes rigorous methods to evaluate natural experiments in health policy and program delivery with a focus on diabetes-related outcomes. Each of the 8 partnering institutions incorporates stakeholder engagement throughout multiple study phases to enhance the patient-centeredness of results. NEXT-D2 dedicates a committee to Engagement for resource sharing, enhancing engagement approaches, and advancing network-wide engagement activities. Key stakeholder engagement activities include Study Meetings, Proposal Development, Trainings & Educational Opportunities, Data Analysis, and Results Dissemination. Network-wide patient-centered resources and multimedia have also been developed through the broad expertise of each site's stakeholder group.
This collaboration has created a continuous feedback loop wherein site-level engagement approaches are informed via the network and network-level engagement efforts are shaped by individual sites. Emerging best practices include: incorporating stakeholders in multiple ways throughout the research, building on previous relationships with stakeholders, enhancing capacity through stakeholder and investigator training, involving stakeholders in refining outcome choices and understanding the meaning of variables, and recognizing the power of stakeholders in maximizing dissemination.
利益相关者（即患者、政策制定者、临床医生、倡导团体、卫生系统领导者、支付方及其他人员）在研究连续体的各个阶段提供关键意见，其贡献日益被视为有效转化研究的重要组成部分。特别是自然实验，在解决实际问题和为未来政策决策提供见解方面可能受益于利益相关者的反馈，尽管文献中关于利益相关者参与观察性研究的最佳实践有限。
糖尿病转化自然实验2.0（NEXT-D2）网络采用严格方法评估卫生政策和项目实施中的自然实验，重点关注糖尿病相关结果。8个合作机构中的每一个都在多个研究阶段纳入利益相关者参与，以提高结果的以患者为中心程度。NEXT-D2专门设立了一个参与委员会，用于资源共享、改进参与方法和推进全网络的参与活动。关键的利益相关者参与活动包括研究会议、提案制定、培训与教育机会、数据分析和结果传播。还通过每个站点利益相关者群体的广泛专业知识开发了全网络以患者为中心的资源和多媒体。
这种合作创建了一个持续的反馈循环，其中站点层面的参与方法通过网络得到信息，而网络层面的参与努力则由各个站点塑造。新出现的最佳实践包括：在整个研究过程中以多种方式纳入利益相关者，基于与利益相关者以前的关系，通过利益相关者和研究者培训提高能力，让利益相关者参与完善结果选择和理解变量的含义，以及认识到利益相关者在最大化传播方面的力量。
