The ultimate power play in research - partnering with patients, partnering with power

Dawn P. Richards; Janelle Bowden; Patrick Gee; Alex Haagaard; Anita Kothari; Annette McKinnon; Codie A. Primeau; Andrea C. Tricco; Ellen Wang; Karen L. Woolley; Linda C. Li

doi:10.1186/s40900-025-00745-9

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The ultimate power play in research - partnering with patients, partnering with power

Journal article

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The ultimate power play in research - partnering with patients, partnering with power

Dawn P. Richards, Janelle Bowden, Patrick Gee, Alex Haagaard, Anita Kothari, Annette McKinnon, Codie A. Primeau, Andrea C. Tricco, Ellen Wang, Karen L. Woolley, …

Research Involvement and Engagement, Vol.11, pp.1-9

2025

DOI: https://doi.org/10.1186/s40900-025-00745-9

PMCID: PMC12172280

PMID: 40528262

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Abstract

power dynamics

power imbalance

power

patient and public involvement

patient engagement

consumer involvement

patient partnership

Research

co-production

diversity

equity

inclusion

Background Patient and public involvement (PPI), also called patient engagement, patient partnership, or consumer involvement, holds potential to change approaches and outcomes in research and healthcare. All research teams have complex power dynamics, including those with patient/public members. We present our perceptions and understandings of power arising from our own experiences on health research teams. We suggest ways for members of health research teams to move forward in efforts to minimize power discrepancies. Main body As an international group of patients, caregivers, and research allies, we have experienced power dynamics within PPI collaborations and believe they must be challenged to achieve more equitable partnerships. We explore four themes relating to power in no order of importance: (1) The unstable and changing nature of power in PPI. Patient/public partners’ abilities and capacities to engage equally depend on the working environment and on their economic, cultural, social and symbolic (including health) capitals; (2) Power between and amongst patients/public partners. Layers of power exist between and amongst patient/public partners and their networks, which may lead to a lack of diversity in partners and/or bullying and requires recognizing that not all patient/public partners bring the same experiences, skills or perspectives to research teams; (3) Power and tokenism. Tokenism occurs when patient/public perspectives in PPI are mostly ignored, results when power and resources are disproportionately concentrated, and can be perpetuated by funding and funding agency infrastructures; and, (4) PPI as a commodity or product. PPI may be seen or used as a means to extract experiences or validate one’s work without truly involving patients/public contributors in the research design and process. PPI aligns with a broader trend of academic research methodologies grounded in standpoint epistemology (that is, how a person’s social identity influences what they know). We include practical recommendations for researchers and for patient/public partners to share power more equitably on research teams. Conclusion In our experiences on health research teams, patient/public partners are often the most vulnerable and most disadvantaged members of the team who experience the largest power inequities. We hope our identified themes about power, the context related to power, and our reflections and recommendations on them inspire those holding power on research teams to share that power.

Details

Title: The ultimate power play in research - partnering with patients, partnering with power
Authors: Dawn P. Richards (Corresponding Author) - Canadian Institutes of Health Research
Janelle Bowden - The University of Queensland
Patrick Gee
Alex Haagaard - Vancouver Coastal Health Research Institute
Anita Kothari - Western University
Annette McKinnon - Canadian Arthritis Patient Alliance
Codie A. Primeau - University of British Columbia
Andrea C. Tricco - St. Michael's Hospital
Ellen Wang - University of British Columbia
Karen L. Woolley - University of the Sunshine Coast, Queensland, School of Health and Sport Sciences - Legacy
Linda C. Li - Research Canada
Publication details: Research Involvement and Engagement, Vol.11, pp.1-9
Publisher: BioMed Central Ltd.
Date published: 2025
DOI: 10.1186/s40900-025-00745-9
ISSN: 2056-7529
PMID: 40528262; PMC12172280
Copyright note: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Data Availability: No datasets were generated or analysed during the current study.
Organisation Unit: School of Health; UniSC Clinical Trials Centre
Language: English
Record Identifier: 991144110002621
Output Type: Journal article

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