Laura P. Forsythe (
Kristin L. Carman is director of the Public and Patient Engagement program at PCORI.
Health Aff (Millwood). 2019 Mar;38(3):359-367. doi: 10.1377/hlthaff.2018.05067.
Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies result in articles published in peer-reviewed journals that detail research findings and engagement's role in research. To inform practices for engaging patients and others as research partners, we analyzed 126 articles that described engagement approaches and contributions to research. PCORI projects engaged patients and others as consultants and collaborators in determining the study design, selecting study outcomes, tailoring interventions to meet patients' needs and preferences, and enrolling participants. Many articles reported that engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance, while a few noted trade-offs of engagement. The findings suggest that engagement can support more relevant research through better alignment with patients' and clinicians' real-world needs and concerns.
为确保研究产生有用的证据来为卫生决策提供信息，以患者为中心的医疗成果研究所（PCORI）要求研究人员让患者和其他医疗保健利益相关者（如临床医生和支付方）参与到研究过程中。许多 PCORI 研究的成果是在同行评审期刊上发表的文章，详细介绍了研究结果和参与研究的作用。为了为作为研究合作伙伴的患者和其他人提供参与实践的信息，我们分析了 126 篇描述参与方法和对研究贡献的文章。PCORI 项目让患者和其他人担任顾问和合作者，共同确定研究设计、选择研究结果、调整干预措施以满足患者的需求和偏好，并招募参与者。许多文章报告说，参与为研究的可行性、可接受性、严谨性和相关性提供了有价值的贡献，而少数文章则指出了参与的权衡取舍。研究结果表明，通过更好地满足患者和临床医生的实际需求和关注点，参与可以支持更相关的研究。
