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

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.

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.