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A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.

Authors :
Macdonald GG
Leese J
Hoens AM
Kerr S
Lum W
Gulka L
Nimmon L
Li LC
Source :
Journal of health services research & policy [J Health Serv Res Policy] 2024 Jan; Vol. 29 (1), pp. 22-30. Date of Electronic Publication: 2023 Aug 26.
Publication Year :
2024

Abstract

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.<br />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.<br />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.<br />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.<br />Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Subjects

Subjects :
Humans
Canada
Motivation
Arthritis

Details

Language :
English
ISSN :
1758-1060
Volume :
29
Issue :
1
Database :
MEDLINE
Journal :
Journal of health services research & policy
Publication Type :
Academic Journal
Accession number :
37632271
Full Text :
https://doi.org/10.1177/13558196231197288