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Published VersionCC BY V4.0, Open Access
Journal article
The ultimate power play in research - partnering with patients, partnering with power
Research Involvement and Engagement, Vol.11, pp.1-9
2025
PMID: 40528262
Abstract
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 ResearchJanelle Bowden - The University of QueenslandPatrick GeeAlex Haagaard - Vancouver Coastal Health Research InstituteAnita Kothari - Western UniversityAnnette McKinnon - Canadian Arthritis Patient AllianceCodie A. Primeau - University of British ColumbiaAndrea C. Tricco - St. Michael's HospitalEllen Wang - University of British ColumbiaKaren L. Woolley - University of the Sunshine Coast, Queensland, School of Health and Sport Sciences - LegacyLinda 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
- 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