We will develop an “engagement studio,” including patients with diabetes and other stakeholders, to inform patient-centered diabetic research. We will emphasize patient-centered research that addresses African-American patients.
South Carolina ranks seventh nationally in diabetes prevalence (14.1 percent of the population has diabetes, and 37.2 percent has pre-diabetes). Further, disease disparities persist: in the state, one in six African Americans has diabetes compared with one in nine Caucasian adults. Disease-related mortality is two times higher in African-American patients.
We propose a four-stage strategy:
- Recruitment (months 1–3): Recruiting through the Greenville Health System (GHS) and related clinics, including mobile health clinics, the GHS Minority Health Summit, LiveWell Greenville collaborative, and local churches
- Building trust (months 3–6): Sharing personal health narratives, group-selected team-building activities, patient/professional co-leadership, and collective goal development
- Creating research capacity (months 4–10): Activities include the following:
- Improving knowledge of diabetes and state-specific management concerns
- Translating personal diabetes experiences into actionable strategies amenable to evaluation (e.g., patient question “Why did this happen to me?” becomes “What are population-specific diabetic risk factors?”)
- Exploring the fundamentals of comparative effective research and information exchange between patients and researchers
- Generating a research question (months 11–12): Concept mapping and standardized patient scenarios generating research questions patients value. Discrete choice modeling to rank-order preference of studio-generated questions.
The applicant agency, GHS Health Sciences Center (GHS HSC), is South Carolina’s largest not-for-profit healthcare delivery system and includes three academic partners—Clemson and Furman Universities, and the University of South Carolina. GHS HSC recently prioritized diabetes care and management, demonstrating this current proposal’s concordance with system priorities.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.