RAND Corporation (LF), Arlington, VA.
Alzheimer's Association (ES), Chicago, IL.
Am J Geriatr Psychiatry. 2020 Apr;28(4):421-430. doi: 10.1016/j.jagp.2019.10.014. Epub 2019 Oct 28.
Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group.
The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations.
The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD.
The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.
在美国，将患者纳入研究活动的情况有所增加，但针对纳入认知障碍患者，尚无相关指导原则。为支持第一届全国痴呆症患者及其照护者护理、服务和支持研究峰会，成立了具有认知障碍患者生活经验的利益相关者团体（PLWD），以支持研究峰会，该团体对大型研究会议的这种参与形式进行了可行性测试，并为团体的具体贡献提供了机会。
峰会联合主席成立了 PLWD 利益相关者团体，作为六个利益相关者团体之一，负责为峰会议程和会议建议提供投入。成员通过有潜在成员个人了解的临床医生/研究人员进行招募。峰会结束后，小组成员开会审议小组对峰会议程、演讲者名单和峰会研究建议的贡献。
PLWD 小组影响了峰会议程的内容，一些小组成员应邀通过峰会演讲做出贡献。该小组影响了峰会的结果：在出现的 58 项研究建议中，有 30 项表达了 PLWD 的想法。
PLWD 的利益相关者小组实施起来是可行的，并影响了全国性的痴呆症研究会议的议程和成果。
