Evidence map›Paper›PMID 37632271›Full record

ArticleJournal of health services research & policy2024

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

Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li

Abstract read
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In one paragraph

Article in Journal of health services research & policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Graham G MacdonaldGraduate Programs in Rehabilitation Sciences, University of British Columbia, Vancouver, British Columbia, Canada.
Jenny LeeseSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Alison M HoensDepartment of Physical Therapy, University of British Columbia, Vancouver, British Columbia, Canada.
Sheila KerrArthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia, Canada.
Wendy LumArthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia, Canada.
Lianne GulkaArthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia, Canada.
Laura NimmonDepartment of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, British Columbia, Canada.
Linda C LiDepartment of Physical Therapy, University of British Columbia, Vancouver, British Columbia, Canada.ORCID 0000-0001-6280-0511

Funding

CIHR
6 · The paper itself

Abstract

objectivesIncorporating 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.

methodsAn 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.

resultsParticipants' 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.

conclusionsOur 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.

Indexed as

ArthritisCanadaHumansMotivationcivic patienthoodPatient engagement in researchpatient journey

Identifiers

PMID37632271
PMCPMC10729530

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.