Abstract
Background: An important but challenging aspect of citizen, patient and caregiver patient engagement is including diverse perspectives - particularly those experiencing health inequities. When people who experience structural marginalisation are excluded from the design of health services, we risk creating a healthcare ecosystem that reinforces health inequities. Despite growing research and practice on knowledge coproduction, few have addressed the role of power relations in patient engagement and offered practical steps for engaging diverse patients in an inclusive way with a goal of improving health equity.
Approach: To fill this knowledge gap, we have co-developed a new conceptual tool, the Power Wheel. We did this by drawing on theoretical concepts of power, our diverse experiences as patient partners throughout the health system, and our experiences co-designing a novel model of patient engagement that is equity promoting, Equity Mobilizing Partnerships in Community (EMPaCT). The output of our participatory action is the Power Wheel tool which can be used to analyse the interspersion of power in the places and spaces of patient engagement with a goal of improving health equity.
Results: The Power Wheel consists of three dimensions (place, space and influence) and each dimension has different levels through which power can be understood, configured and reconfigured through ongoing reflection and analysis. Place determines which level of decision-making is open for discussion. Places hold different degrees of social, political and economic power depending on their level: micro, meso or macro. Space determines the social relationships between people that shape conversations around decision-making. Social and cultural forces determine the dimensions of space and can take three forms: closed, where decision-making occurs without patient engagement; invited, where patient partners are invited into healthcare spaces to contribute their perspectives on a predetermined topic or area of study; and created, informal or formal places where patient partners come together around a common need, and create their own boundaries around priorities, policies and programmes. Influence is the degree to which decision-making is shared towards a common goal. It can take four forms: inform, where patient partners are provided with information about what is being done and what it means for them; consult, where patient partners are involved in providing input on a specific project; collaborate where their input is taken into account when decisions are made; and decide, where decisions are made by patient partners and implemented by institutions and projects.
Implications: The Power Wheel is an action-oriented tool that supports better praxis (reflection + action) in equity-promoting citizen/patient engagement. In this presentation, we share how practitioners, researchers, clinicians and decision-makers can use the Power Wheel as a reporting tool to share their patient engagement practices, as a reflective tool to analyse the various dimensions of power within their patient engagement practices, and as a transformative tool to identify tangible actions to modify spaces and places of patient engagement for equitable health systems redesign.