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)

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.