Richards Dawn P, Bowden Janelle, Gee Patrick, Haagaard Alex, Kothari Anita, McKinnon Annette, Primeau Codie A, Tricco Andrea C, Wang Ellen, Woolley Karen L, Li Linda C
Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis, University of British Columbia, Vancouver, BC, Canada.
Five02 Labs Inc., Toronto, ON, Canada.
Res Involv Engagem. 2025 Jun 17;11(1):65. doi: 10.1186/s40900-025-00745-9.
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.
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.
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.
患者及公众参与（PPI），也被称为患者参与、患者合作或消费者参与，有望改变研究及医疗保健的方法和结果。所有研究团队都存在复杂的权力动态，包括那些有患者/公众成员参与的团队。我们阐述了基于自身在健康研究团队中的经历而对权力产生的认知和理解。我们提出了一些方法，供健康研究团队成员努力减少权力差异。
作为一个由患者、护理人员和研究盟友组成的国际团体，我们在患者及公众参与合作中经历过权力动态，并且认为必须对其提出挑战，以实现更公平的合作关系。我们探讨与权力相关的四个主题，不按重要性排序：（1）患者及公众参与中权力的不稳定和变化性质。患者/公众合作伙伴平等参与的能力和容量同样取决于工作环境以及他们的经济、文化、社会和象征（包括健康）资本；（2）患者/公众合作伙伴之间的权力。患者/公众合作伙伴及其网络之间存在权力层次，这可能导致合作伙伴缺乏多样性和/或欺凌行为，并且需要认识到并非所有患者/公众合作伙伴给研究团队带来的经历、技能或观点都是相同的；（3）权力与装点门面。当患者及公众参与中的患者/公众观点大多被忽视时，装点门面的情况就会出现，这是权力和资源过度集中的结果，并且可能因资金和资助机构的基础设施而长期存在；以及，（4）患者及公众参与作为一种商品或产品。患者及公众参与可能被视为或用作一种手段，用于提取经验或验证某人的工作，而没有真正让患者/公众贡献者参与研究设计和过程。患者及公众参与与基于立场认识论（即一个人的社会身份如何影响他们所知道的东西）的更广泛的学术研究方法趋势相一致。我们为研究人员和患者/公众合作伙伴提供了一些实用建议，以便在研究团队中更公平地分享权力。
根据我们在健康研究团队中的经验，患者/公众合作伙伴往往是团队中最脆弱、最弱势的成员，他们经历着最大的权力不平等。我们希望我们确定的关于权力的主题、与权力相关的背景以及我们对这些主题的思考和建议能够激励研究团队中掌握权力的人分享权力。
