CREATING A SHARED VISION FOR PATIENT PARTNERED RESEARCH: AN EXAMPLE FROM THE PRODUCING AN ARTHRITIS VALUE FRAMEWORK WITH ECONOMIC EVIDENCE: PAVING THE WAY FOR RARE CHILDHOOD DISEASE (PAVE) PROJECT
Author(s)
Gillian R. Currie, PhD1, Brittany Gerber, MA1, Jaslene Atwal, Parent Partner1, Sam Atwal, Parent Partner1, John Bang, Patient Partner1, Kayla Caddy, Patient Partner1, Lisa George, Parent Partner1, Anna Goncharova, Parent Partner1, Morgan Harris, Patient Partner1, Janna Hart, Parent Partner1, Betts MacDonald, Parent Partner1, Lauren McClinton, Patient Partner1, Trish Snyder, Parent Partner1, Natasha Trehan, Patient Partner1, Alejandra Van Dusen, Patient Partner1, Erik Van Dusen, Parent Partner1, Kira Young, Patient Partner1, Jennifer Wilson, BA2, Deborah A. Marshall, PhD1.
1University of Calgary, Calgary, AB, Canada, 2Cassie+Friends, Vancouver, BC, Canada.
1University of Calgary, Calgary, AB, Canada, 2Cassie+Friends, Vancouver, BC, Canada.
OBJECTIVES: Aligning with good practices in patient-oriented research, we must understand what values are important to patients, what motivates them to be involved in research and what they hope to achieve. We describe our approach to co-creating a shared vision in patient-partnered research.
METHODS: This example is embedded within the PAVE project which will co-create a framework to capture the impacts of childhood arthritis on patients and families. With our patient advocacy organization partner, Cassie+Friends, we identified research partners: 7 young adults with JIA and 8 parents of children with JIA. To create shared vision, we conducted a patient-engagement process to identify: “why” for partnering, and the values they wanted to guide the process. Responses were recorded using the Zoom Whiteboard feature. A word cloud was created to summarize values and responses to “why” were analyzed to create categories for motivations.
RESULTS: Our research partners’ motivations spanned five categories: knowledge building (e.g., bringing in patient/family voices, collecting what matters to those impacted), making a positive difference (e.g., increased awareness, improving outcomes), community building (e.g., connecting with others with similar experiences), advocacy (e.g., enabling effective advocacy for resources, support and care), and personal growth (e.g., deepening understanding through personal stories). Guiding values identified included openness, safety, solidarity, support, empathy and respect for different journeys.
CONCLUSIONS: Creating a shared vision sets the stage for meaningful engagement: guiding values inform our interactions while understanding motivations and what partners hope to achieve enhances and enriches the research. In our work, in addition to co-creating research, which aligns with motivation to build knowledge, we can also identify ways to meet the other motivations including advocacy (e.g., highlighting areas for change), community building (e.g., learning what the community needs), making a positive difference (e.g., leveraging results to other childhood diseases, continued partnership relationships), and by creating opportunities for personal growth.
METHODS: This example is embedded within the PAVE project which will co-create a framework to capture the impacts of childhood arthritis on patients and families. With our patient advocacy organization partner, Cassie+Friends, we identified research partners: 7 young adults with JIA and 8 parents of children with JIA. To create shared vision, we conducted a patient-engagement process to identify: “why” for partnering, and the values they wanted to guide the process. Responses were recorded using the Zoom Whiteboard feature. A word cloud was created to summarize values and responses to “why” were analyzed to create categories for motivations.
RESULTS: Our research partners’ motivations spanned five categories: knowledge building (e.g., bringing in patient/family voices, collecting what matters to those impacted), making a positive difference (e.g., increased awareness, improving outcomes), community building (e.g., connecting with others with similar experiences), advocacy (e.g., enabling effective advocacy for resources, support and care), and personal growth (e.g., deepening understanding through personal stories). Guiding values identified included openness, safety, solidarity, support, empathy and respect for different journeys.
CONCLUSIONS: Creating a shared vision sets the stage for meaningful engagement: guiding values inform our interactions while understanding motivations and what partners hope to achieve enhances and enriches the research. In our work, in addition to co-creating research, which aligns with motivation to build knowledge, we can also identify ways to meet the other motivations including advocacy (e.g., highlighting areas for change), community building (e.g., learning what the community needs), making a positive difference (e.g., leveraging results to other childhood diseases, continued partnership relationships), and by creating opportunities for personal growth.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR16
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), Pediatrics, Rare & Orphan Diseases