Peer-reviewed article
Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).
Brittany Gerber, Gillian R Currie, Jaslene Atwal, Sam Atwal, John Bang et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This peer-reviewed commentary describes a patient engagement process within the PAVE project, which involved co-creating a value framework with young adults and parents affected by childhood arthritis in Canada. The authors document how they established shared vision and guiding values with research partners to enable meaningful collaboration. The work focuses on research methodology and patient involvement processes rather than evaluating interventions for child health outcomes.
Key points
- Research partners (7 young adults and 8 parents) identified five motivations for engagement: building knowledge and awareness, making a positive difference, community building, advocacy, and personal growth
- Co-created guiding values for the partnership included openness, safety, solidarity, support, empathy and respect for different journeys
- The shared vision process aimed to understand both the 'why' for partnering and the values to guide the research partnership
- The approach is presented as a case example that other researchers can adopt and adapt for their own patient-partnered projects
Limitations
This is a methodological commentary on patient engagement processes rather than an evaluation of health outcomes or interventions for children with arthritis. It describes the approach taken in one project and does not measure the effectiveness of the engagement strategy on research quality or patient health outcomes.
Abstract
BACKGROUND: To align with good practices in patient-oriented research, academic researchers who are involving patients in research must understand what values are important to patients, what motivates involvement in research and what patients hope to achieve by partnering in research. In this commentary, we add to the literature on creating a shared understanding with patient partners by describing our approach to co-creating a shared vision in a patient-partnered research project as a case example of patient and public involvement in research. A CASE EXAMPLE: This example is embedded within the Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, where we co-created a value framework with patients and parents to capture the ways that childhood arthritis affects families. We partnered with Cassie + Friends to identify and select patients and parents from across Canada who were interested in joining the project as research partners. The research partners included seven young adults and eight parents of children with childhood arthritis. At the outset of the project, we conducted a patient-engagement process with the patient and parent research partners to create shared vision, whereby we sought to understand: (1) the "why" for partnering, and (2) the values they wanted to guide the research partnership. Through this process, we jointly identified the patient and parent research partners' motivations, which spanned five related categories: building knowledge and awareness, making a positive difference, community building, advocacy, and personal growth. We also co-created guiding values for our collaborative work, which included openness, safety, solidarity, support, empathy and respect for different journeys. CONCLUSIONS: This shared vision sets the stage for meaningful engagement: guiding values inform interactions while understanding motivations enhances and enriches the research. We have provided a case example of how we co-created a vision and set our project team up for meaningful engagement. This process has allowed us to develop strong, trusting and ongoing relationships between researchers and the research partners and provides an example that other researchers can adopt and adapt in their settings to co-create shared vision for their patient partnered projects.