Integrating participants as partners in research governance and operations: an approach from the

Clinical governance PUBLIC HEALTH Patient Participation

Journal

BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874

Informations de publication

Date de publication:
27 Nov 2023
Historique:
medline: 29 11 2023
pubmed: 28 11 2023
entrez: 27 11 2023
Statut: epublish

Résumé

During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%). In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.

Identifiants

pubmed: 38011981
pii: bmjopen-2022-068100
doi: 10.1136/bmjopen-2022-068100
pmc: PMC10685928
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

e068100

Subventions

Organisme : NCI NIH HHS
ID : L60 CA264691
Pays : United States
Organisme : NCI NIH HHS
ID : K99 CA277366
Pays : United States
Organisme : AHRQ HHS
ID : T32 HS026122
Pays : United States
Organisme : NIH HHS
ID : OT2 OD035404
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR002243
Pays : United States
Organisme : NIH HHS
ID : OT2 OD035980
Pays : United States
Organisme : NIMHD NIH HHS
ID : U54 MD010722
Pays : United States
Organisme : NIH HHS
ID : U2C OD023196
Pays : United States

Informations de copyright

© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: None declared.

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Auteurs

Catherine Hammack-Aviran (C)

Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Ethics, Education, Policy, and Society, Research Immersion Program at Vanderbilt University Medical Center, Nashville, Tennessee, USA.

Alecia Malin Fair (AM)

Department of Medicine; Division of Geriatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA.

Melinda Aldrich (M)

Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA.

Jennifer Richmond (J)

Department of Social Sciences and Health Policy and Department of Implementation Science, Wake Forest School of Medicine, Winston-Salem, North Carolina, USA.

Selena McCoy Carpenter (SM)

Office of Health Equity, Vanderbilt University Medical Center, Nashville, Tennessee, USA.

Karriem S Watson (KS)

All of Us Research Program, National Institutes of Health, Bethesda, Maryland, USA.

Elizabeth G Cohn (EG)

Zucker School of Medicine, Northwell Health Feinstein Institutes for Medical Research, Manhasset, New York, USA.

Consuelo Hopkins Wilkins (CH)

Department of Medicine; Division of Geriatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA consuelo.h.wilkins@vumc.org.
Office of Health Equity, Vanderbilt University Medical Center, Nashville, Tennessee, USA.

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