超越患者的患者身份：对加拿大关节炎患者顾问委员会中患者研究伙伴参与经历的叙述分析。
A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.
机构信息
Graduate Programs in Rehabilitation Sciences, University of British Columbia, Vancouver, British Columbia, Canada.
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
出版信息
J Health Serv Res Policy. 2024 Jan;29(1):22-30. doi: 10.1177/13558196231197288. Epub 2023 Aug 26.
OBJECTIVES
Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis.
METHODS
An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada.
RESULTS
Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease.
CONCLUSIONS
Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.
目的
将患者和公众的观点纳入研究的实施过程中，有可能使科学研究更加民主。本文探讨了作为关节炎患者咨询委员会的患者伙伴，如何塑造一个患有关节炎的人的患者身份。
方法
对 22 名接受采访的关节炎患者研究伙伴的叙述进行了分析，这些伙伴参与了位于加拿大温哥华的关节炎患者咨询委员会（APAB）。
结果
参与者参与 APAB 的动机主要源于他们改变与病情关系的愿望。APAB 是一个充满活力的集体项目，参与者在这里投入了希望，不仅是为了自己作为患者的生活，也为了其他患有这种疾病的人。
结论
我们的研究结果强调了患者伙伴的经历如何将看似不同的患者身份概念联系和整合在一起。一个人作为临床“患者”的经历转化为更广泛的公民患者身份概念。
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