Center for Advancing Population Science, Division of General Internal Medicine, Department of Medicine, Medical College of Wisconsin, Wauwatosa, Wisconsin, USA.
Department of Family and Community Medicine, Center for Healthy Communities and Research, Medical College of Wisconsin, Wauwatosa, Wisconsin, USA.
Health Expect. 2022 Feb;25(1):408-418. doi: 10.1111/hex.13401. Epub 2021 Dec 10.
Patient engagement in research agenda setting is increasingly being seen as a strategy to improve the responsiveness of healthcare to patient priorities. Implementation of low-dose computed tomography (LDCT) screening for lung cancer is suboptimal, suggesting that research is needed.
This study aimed to describe an approach by which a Veteran patient group worked with other stakeholders to develop a research agenda for LDCT screening and to describe the research questions that they prioritized.
We worked with Veterans organizations to identify 12 Veterans or family members at risk for or having experience with lung cancer to form a Patient Advisory Council (PAC). The PAC met repeatedly from June 2018 to December 2020, both independently and jointly, with stakeholders representing clinicians, health administrators and researchers to identify relevant research topics. The PAC prioritized these topics and then identified questions within these areas where research was needed using an iterative process. Finally, they ranked the importance of obtaining answers to these questions.
PAC members valued the co-learning generated by interactions with stakeholders, but emphasized the importance of facilitation to avoid stakeholders dominating the discussion. The PAC prioritized three broad research areas-(1) the impact of insurance on uptake of LDCT; (2) how best to inform Veterans about LDCT; and (3) follow-up and impact of screening results. Using these areas as guides, PAC members identified 20 specific questions, ranking as most important (1) innovative outreach methods, (2) the impact of screening on psychological health, and (3) the impact of outsourcing scans from VA to non-VA providers on completion of recommended follow-up of screening results. The latter two were not identified as high priority by the stakeholder group.
We present an approach that facilitates co-learning between Veteran patients and providers, researchers and health system administrators to increase patient confidence in their ability to contribute important information to a research agenda. The research questions prioritized by the Veterans who participated in this project illustrate that for this new screening technology, patients are concerned about the practical details of implementation (e.g., follow-up) and the technology's impact on quality of life.
Veterans and Veteran advocates contributed to our research team throughout the entire research process, including conceiving and co-authoring this manuscript.
越来越多的人认为，让患者参与研究议程的制定是提高医疗保健对患者需求的响应能力的一种策略。低剂量计算机断层扫描（LDCT）筛查肺癌的实施情况并不理想，这表明需要开展相关研究。
本研究旨在描述退伍军人患者群体与其他利益相关者合作制定 LDCT 筛查研究议程的方法，并描述他们优先考虑的研究问题。
我们与退伍军人组织合作，确定了 12 名有肺癌风险或有肺癌经历的退伍军人或家属组成患者顾问委员会（PAC）。该 PAC 从 2018 年 6 月至 2020 年 12 月期间，独立地和联合地与代表临床医生、医疗管理人员和研究人员的利益相关者多次会面，以确定相关的研究主题。PAC 对这些主题进行了优先排序，然后使用迭代过程确定在这些领域需要开展研究的问题。最后，他们对回答这些问题的重要性进行了排名。
PAC 成员重视与利益相关者互动所产生的共同学习，但强调需要促进这种互动，以避免利益相关者主导讨论。PAC 确定了三个广泛的研究领域：（1）保险对 LDCT 采用率的影响；（2）如何最好地向退伍军人告知 LDCT；（3）筛查结果的随访和影响。PAC 成员使用这些领域作为指导，确定了 20 个具体问题，将以下问题列为最重要的问题：（1）创新的外展方法；（2）筛查对心理健康的影响；（3）将 VA 扫描外包给非 VA 提供者对完成推荐的筛查结果随访的影响。这后两个问题没有被利益相关者群体列为高优先级。
我们提出了一种方法，该方法促进了退伍军人患者与提供者、研究人员和医疗系统管理人员之间的共同学习，增强了患者对自己为研究议程提供重要信息的能力的信心。参与本项目的退伍军人优先考虑的研究问题表明，对于这项新的筛查技术，患者关注的是实施的实际细节（例如，随访）和该技术对生活质量的影响。
退伍军人及其倡导者在整个研究过程中都为我们的研究团队做出了贡献，包括构思和共同撰写本文。
