Abstract
BackgroundPatient 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 experiences on health research teams. We suggest ways for members of health research teams to move forward in efforts to minimize power discrepancies.Main BodyAn 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) 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; 2) 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); 3) 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; and, 4) Power 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. We include practical recommendations for researchers and for patient/public partners to share power more equitably on research teams.ConclusionIn our experiences on health research teams, patient/public partners are often the most vulnerable members of the team who experience the largest power inequities. We hope our reflections and recommendations inspire those holding power on research teams to share that power.