The Participatory Research to Action (PR2A) Framework: applications and opportunities for authentic engagement of experts-by-experience from inception to uptake

Participatory approaches to health services research represent a paradigm shift that values the knowledge of experts-by-experience, including patients, caregivers, members of the general public, healthcare providers, and decision-makers. While many frameworks have been developed, they are generally tailored to a sector, health condition, research stage, or research design. After an extensive literature scan and our team's deep expertise in community-based, applied health services research, the SE Research Centre developed a novel framework to guide the involvement of experts-by-experience, incorporating concepts from service design, co-design, and integrated knowledge translation.

Our Participatory Research to Action (PR2A) framework offers flexible yet structured guidance for engaging with experts-by-experience in the complete research cycle, from development of questions and methods to relationship-building, prototype testing and evaluation. The PR2A framework emphasizes creative approaches and embeds meaningful engagement of experts-by-experience through six iterative stages: 1) Readiness; 2) Discover; 3) Define; 4) Develop; 5) Deliver; and 6) Measure.

In this interactive workshop, delegates interested in creative, rigorous co-design research will learn about the features of the PR2A framework and how to apply it within their research settings and projects. First, we will describe the PR2A framework and its development. We will then provide two case studies showcasing the application of the PR2A framework in federally-funded research studies across Canada: (1) the co-design and testing of Our Dementia Journey Journal, an interactive resource to facilitate sustainable relationship building between caregivers and care providers of persons living with dementia, including versions to respect culture-specific approaches to dementia in First Nations and South Asian communities in Canada; and (2) the co-design of tools and approaches for non-mental health specialists in home and community care to start non-stigmatizing mental health conversations with clients and their caregivers. Then we will introduce delegates to a real research scenario about post-cardiac surgery care and provide materials and an opportunity for delegates to be supported in small groups to work through the PR2A framework to address the scenario. The small group work will be designed to resemble the Develop stage of the framework, enabling the delegates to experience part of the framework as participants. Finally, in a share-back session, delegates will have an opportunity to share their experience with the PR2A framework, and how it may offer new paths for their future research.

Workshop outline:

1. 10 minutes – PR2A framework introduction

2. 12 minutes – Case 1: Applying the PR2A in the development and cultural adaptation of Our Dementia Journey Journal

3. 12 minutes – Case 2: Applying the PR2A in developing a process and tools for starting non-stigmatizing mental health conversations

4. 10 minutes – Introduction of the post-cardiac surgery care scenario

5. 36 minutes – Small group experience using the PR2A framework

6. 10 minutes – Wrap up, questions, and reflections

Takeaways: Delegates will be provided with template PR2A materials, be equipped with experience working through the framework, and be given access to additional online resources and examples to inform their future participatory research practice; authentically engaging experts-by-experience throughout the full research cycle.