Background: Even in a pandemic, chronic disease is the main cause of death in the United States. The building blocks of chronic disease start in infancy and weight is a frequent target for prevention efforts, but only treating “obesity” does not work for all. In fact, focusing on weight can close doors with communities of color given that ideas about the perfect body, driven by white norms, often lead to stigma. Talking instead about the patient-centered outcomes (PCOs) related to eating, activity and whole-child growth that matter most to communities of color is necessary to support equitable patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER).
Proposed Solution to the Problem: PCOR/CER often misses voices from communities of color. The project team proposes meeting with two urban communities of color to define PCOs in relationship to chronic disease, eating, activity and whole-child growth. The project team will create a PCOR/CER agenda by convening a Core Team of community, healthcare and research partners and holding two large Stakeholder Group meetings. This work will succeed because of the partnerships the Core Team has built with each other and the communities they serve.
- Describe PCOs related to chronic disease, eating, activity and whole-child growth using shared language.
- Create a community-led PCOR/CER agenda to achieve PCOs related to whole-child growth.
- Build partnerships with communities to do meaningful PCOR/CER together in the future.
Activities: The Core Team will meet monthly and bring together a Stakeholder Group of researchers, healthcare professionals and families from the included communities to participate in two larger meetings. They will develop a shared vision and host a Stakeholder Group meeting to define chronic disease-related PCOs. They will develop a PCOR/CER agenda and evaluation toolkit and hold a final Stakeholder Group meeting to get feedback on the agenda and plan future work together.
Projected Outcomes and Outputs: These activities will lead to two outputs:
- An eating, activity and whole-child growth PCOR/CER agenda.
- A PCOR/CER evaluation toolkit.
Short-term outcomes during the project period include:
- Define PCOs using shared language.
- Co-develop a research agenda.
- Build relationships to move the research forward together.
Medium-term outcomes (0-2 years post-project period) include:
- Secure funding.
- Carry out the research agenda.
Long-term outcomes (3+ years post-project period) include:
- Achieve PCOs.
- Solidify trust between sectors.
Patient and Stakeholder Engagement Plan: This project is shaped by and for the stakeholders it serves. Together the project team and stakeholders developed stakeholder engagement strategies following the PCORI Engagement Rubric for each sector and each project phase. Examples include removing access barriers to participation and elevating community voices. By engaging stakeholders in this way, the outcomes and outputs of this work will be meaningful for all stakeholders.
Project Collaborators: The cross-sector Core Team has an impressive portfolio of partnerships that support the project. For example, patient/community partners are from and work closely with patients in urban communities of color and have a history of partnering with health care. Healthcare partners have a history of successful community initiatives and a strong history of participation in PCORI-funded PCOR/CER. Research partners have years of experience with community-engaged, patient-centered research related to eating, activity and whole-child growth.