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

Dawn P Richards^{1

2

3}, Janelle Bowden^{4

5}, Patrick Gee⁶, Alex Haagaard^{7

8}, Anita Kothari⁹, Annette McKinnon^{10

11

12}, Codie A Primeau^{13

14}, Andrea C Tricco^{15

16}, Ellen Wang^{13

17}, Karen L Woolley^{5

18

19}, Linda C Li^{13

17}

Affiliations

¹ Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada. dawn.p.richards@gmail.com.
² Five02 Labs Inc., Toronto, ON, Canada. dawn.p.richards@gmail.com.
³ Patient Author, Toronto, ON, Canada. dawn.p.richards@gmail.com.
⁴ AccessCR Pty Ltd, Sydney, NSW, Australia.
⁵ University of Queensland, Brisbane, QLD, Australia.
⁶ iAdvocate, North Chesterfield, VA, USA.
⁷ Patient Author, Kingston, ON, Canada.
⁸ DigiMSK Research Group, Center for Aging SMART, Vancouver Coastal Health Research Institute, Vancouver, BC, Canada.
⁹ School of Health Studies, Western University, London, ON, Canada.
¹⁰ Patient Author, Toronto, ON, Canada.
¹¹ Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
¹² Patient Advisors Network, Toronto, ON, Canada.
¹³ Arthritis Research Canada, Vancouver, BC, Canada.
¹⁴ Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
¹⁵ Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
¹⁶ Epidemiology Division, Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
¹⁷ University of British Columbia, Vancouver, BC, Canada.
¹⁸ , Caregiver Author, Australia.
¹⁹ University of the Sunshine Coast, Sippy Downs, QLD, Australia.

PMID: 40528262
PMCID: PMC12172280
DOI: 10.1186/s40900-025-00745-9

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

Dawn P Richards et al. Res Involv Engagem. 2025.

. 2025 Jun 17;11(1):65.

doi: 10.1186/s40900-025-00745-9.

Authors

Affiliations

¹ Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada. dawn.p.richards@gmail.com.
² Five02 Labs Inc., Toronto, ON, Canada. dawn.p.richards@gmail.com.
³ Patient Author, Toronto, ON, Canada. dawn.p.richards@gmail.com.
⁴ AccessCR Pty Ltd, Sydney, NSW, Australia.
⁵ University of Queensland, Brisbane, QLD, Australia.
⁶ iAdvocate, North Chesterfield, VA, USA.
⁷ Patient Author, Kingston, ON, Canada.
⁸ DigiMSK Research Group, Center for Aging SMART, Vancouver Coastal Health Research Institute, Vancouver, BC, Canada.
⁹ School of Health Studies, Western University, London, ON, Canada.
¹⁰ Patient Author, Toronto, ON, Canada.
¹¹ Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
¹² Patient Advisors Network, Toronto, ON, Canada.
¹³ Arthritis Research Canada, Vancouver, BC, Canada.
¹⁴ Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
¹⁵ Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
¹⁶ Epidemiology Division, Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
¹⁷ University of British Columbia, Vancouver, BC, Canada.
¹⁸ , Caregiver Author, Australia.
¹⁹ University of the Sunshine Coast, Sippy Downs, QLD, Australia.

PMID: 40528262
PMCID: PMC12172280
DOI: 10.1186/s40900-025-00745-9

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.

Keywords: And inclusion; Co-production; Consumer involvement; Diversity; Equity; Patient and public involvement; Patient engagement; Patient partnership; Power; Power dynamics; Power imbalance; Research.

Plain language summary

Patient and public involvement (PPI) may also be called patient engagement, patient partnership, or consumer involvement, and can change the ways research is done and how healthcare is delivered. All research teams have dynamics related to who holds power, including teams with patient/public members. We are an international team that includes patients, caregivers, and research allies. We have experienced power dynamics within our PPI collaborations and believe these power dynamics must be challenged so better partnerships can be built. We look at four themes relating to power in no order of importance. First, power is unstable and changes in PPI. For example, patient/public partners’ abilities and capacities to contribute are greatly affected by where the work is done and their economic, cultural, social backgrounds. Second, there are power dynamics between and amongst the patients/public partners. These 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 teams. Third, tokenism is when patient/public perspectives in PPI are mostly ignored, and is often a result of how research is funded, including who holds the funding. Lastly, PPI is sometimes seen as a commodity or product used to benefit the research team, but not necessarily the patients/public contributors. Context is also an important factor in the discussion about power. Based on our own experiences, we suggest ways for members of health research teams to more equitably share power.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: JB: Nonfinancial: Advocates for patient involvement in medical research and therapeutic development; financial: Is a paid clinical trials and patient partnership consultant with patient, academic, and industry clients. CAP: Nonfinancial: an early career clinician researcher who also works with a non-profit organization that focuses on community-based research with 2 S/LGBTQQIA+ communities. DPR makes her living helping people and organizations with patient engagement initiatives. She is a full-time employee of Five02 Labs, Inc., and is under contract to the Canadian Institutes of Health Research’s Institute of Musculoskeletal Health and Arthritis to support its patient engagement efforts. AH works in a paid capacity with public institutions and non-profit organizations in the healthcare field consulting on digital health equity and disability justice. Is a patient advocate focused on knowledge mobilization and implementation science in the chronic pain space. KLW: Nonfinancial: Advocates for patient involvement in medicines development; financial: Is a paid patient partnership consultant for patient, academic, and industry clients. ACT: Nonfinancial: a salaried researcher who advocates for patient engagement. EW: Nonfinancial: a research trainee who also works in both volunteer and paid capacity for a non-profit organizations that aim to improve the lives of patients living with arthritis. LCL: Nonfinancial: works as a researcher and serves as a research ally to people with lived experience in health research and knowledge mobilization. All patient authors were offered an honorarium for their contributions and expertise by LCL.

Figures

**Fig. 1**
Four themes concerning power in PPI. The figure shares and describes four themes our team has identified relating to power in PPI. These themes are not presented in any order of importance

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Plain language summary

Conflict of interest statement

Figures

References

Publication types

LinkOut - more resources

Full Text Sources

Research Materials