Developing and applying the ‘Participatory Research to Action Framework’ for meaningful engagement of experts-by-experience in applied health services research: a case study approach

While many frameworks have been developed to guide participatory research, they are often tailored to a sector, health condition, research stage, or research design; making them highly specific and not easily transferable to other contexts. This paper reports on the iterative development of an overarching framework for participatory research, conducted within an applied health services research centre. The research centre needed a framework that was appropriate to a methodologically and substantively diverse program of research, involvement of a wide range of experts-by-experience, and that encompassed the full cycle of research including implementation and evaluation. Development and application of the Participatory Research to Action Framework (PR2A) used a design science approach and is described through three sequential cases of participatory research that applied a range of methods, including: literature review, environmental scan, photo-journaling, co-design workshops, prototyping and process mapping. Reflections and learnings from each case influenced the subsequent cases. In the first case, the research centre team encountered challenges when applying a service design approach to co-designing a cardiac care pathway. In the second case, the team used process mapping to develop a new framework, the Participatory Research to Action Framework (PR2A). The PR2A emphasizes creative approaches and embeds meaningful engagement of patients, caregivers, healthcare providers, health system leaders and others throughout six iterative stages: 1) Readiness; 2) Discover; 3) Define; 4) Develop; 5) Deliver; and 6) Measure. In the third case, the PR2A was successfully applied to create resources for caregivers and healthcare providers of people living with dementia. The PR2A integrates key concepts from participatory methods used in health services research and service design to span the breadth of participants, methods, and research phases in community-based, action-oriented, applied health services research. It offers a holistic approach and strategies to ensure commitments to participation and to action are woven through every component of a research project. Health researchers are increasingly recognizing how important it is to involve patients, caregivers, healthcare providers, decision-makers, and other people with expertise by lived experience in the research process. Many resources exist to offer guidance on how researchers and experts-by-experience can collaborate. However, these resources may be specific to a particular health condition, health service, or type of research and this narrow focus often makes these resources limited in their applicability. This paper describes how an applied research centre created and used a new guiding framework for conducting participatory research authentically with experts-by-experience across a broad range of health research projects. First, we describe our experience of using existing resources when working with providers, patients and caregivers to design supports for heart surgery patients. We found that the existing guidance offered was either too specific, or not specific enough. Next, we engaged in a mapping process to bring together existing resources and our own experiences to create the Participatory Research to Action Framework (PR2A). PR2A describes creative approaches to authentically involve a range of experts-by-experience throughout the whole research process, with a focus on developing usable knowledge and putting it into action. Lastly, we explain how we applied this framework when working with caregivers of people living with dementia to develop a tool for communication primarily between caregivers and healthcare providers.

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