Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li
{"title":"超越病人的病人身份:分析患者研究伙伴参与加拿大关节炎患者咨询委员会的叙述。","authors":"Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li","doi":"10.1177/13558196231197288","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":15953,"journal":{"name":"Journal of Health Services Research & Policy","volume":" ","pages":"22-30"},"PeriodicalIF":1.9000,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10729530/pdf/","citationCount":"0","resultStr":"{\"title\":\"A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.\",\"authors\":\"Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li\",\"doi\":\"10.1177/13558196231197288\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":15953,\"journal\":{\"name\":\"Journal of Health Services Research & Policy\",\"volume\":\" \",\"pages\":\"22-30\"},\"PeriodicalIF\":1.9000,\"publicationDate\":\"2024-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10729530/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Health Services Research & Policy\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/13558196231197288\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/8/26 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH POLICY & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Health Services Research & Policy","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/13558196231197288","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/8/26 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}
A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.
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.
期刊介绍:
Journal of Health Services Research & Policy provides a unique opportunity to explore the ideas, policies and decisions shaping health services throughout the world. Edited and peer-reviewed by experts in the field and with a high academic standard and multidisciplinary approach, readers will gain a greater understanding of the current issues in healthcare policy and research. The journal"s strong international editorial advisory board also ensures that readers obtain a truly global and insightful perspective.