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)

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. 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. 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. As part of the Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, our academic team partnered with patients and parents to understand the ways that childhood arthritis affects families. In this commentary, we describe 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. We used an interactive, online process to enable patient and parent research partners to articulate their motivation for partnering with us (their “why”) and what values were important to them to guide our work on the project (our guiding values). By carving out intentional time to co-create what we called our “shared vision” at the beginning of the project we set the stage for meaningful collaboration. We learned that the patient and parent research partners’ motivations included building knowledge and awareness, making a positive difference, community building, advocacy, and personal growth, and focus on how we could meet these motivations. We also co-created guiding values for our work, which included openness, safety, solidarity, support, empathy and respect for different journeys. As a result, we were able to develop strong, trusting and ongoing relationships between researchers and patient and parent research partners. This case example of our process can enable other researchers learn from our experiences and adapt and apply them in their project contexts.