August 18, 2020 | Erin Bluvas, firstname.lastname@example.org
Nabil Natafgi, an assistant professor in the Arnold School’s Department of Health Services Policy and Management, and Ann Blair Kennedy, a clinical assistant professor of biomedical sciences at the UofSC School of Medicine Greenville, are launching a project that utilizes technology to engage hard-to-reach patients. With funding from a one-year $100K grant from the Patient-Centered Outcomes Research Institute, the co-principal investigators will develop a diabetes-focused Virtual Patient (VIP) Engagement Studio to remotely connect with diabetes patients who are typically hard to reach.
Among its many poor health rankings, South Carolina has the fifth highest prevalence of diabetes in the United States. More than one-third of the state’s population consists of racial minority and rural populations, and researchers have found major disparities between these groups and the rest of the population.
For example, one-in-six African Americans has diabetes compared to one-in-nine Caucasian adults. Further, the risk of dying from diabetes-related health problems is two times greater for African Americans. In addition, rural counties in South Carolina show 1.7 times higher rates of diabetes prevalence than in urban counties. The counties where diabetes mortality is the highest are also rural counties where poverty rates are the highest.
“The VIP Studio strives to expand the participation of patients historically underrepresented in research,” Natafgi says. “Our goal is to understand patient perspectives on health issues related to diabetes that are more representative of the patient population afflicted with this condition.”
Previous research has already demonstrated that patient engagement and patient-centered research yields positive effects in the areas of design (e.g., more relevant research questions), recruitment (e.g., increased enrollment and attrition), data interpretation (e.g., more meaningful analyses) and dissemination (e.g., more understandable outcomes). These studies engage patients, caregivers, clinicians and other healthcare stakeholders as experts and collaborators who significantly contribute to all aspects of the project.
However, there are many challenges to achieving meaningful patient engagement, such as geographic, racial, ethnic, cultural and socioeconomic barriers. Through its innovative technology-based approach, this study aims to engage “hard-to-reach” individuals who typically do not participate in research due to one or more of these barriers.
In addition to leveraging technology to overcome barriers to in-person participation, this project builds on the success of the Patient Engagement Studio, a partnership between Prisma Health, the University of South Carolina, Clemson University and Furman University. Established in 2016 in response to the absence of a process to incorporate patient input into research projects and clinical innovations, the Studio acts as a steering committee that reviews all projects prior to the formation of condition-specific studios addressing health conditions such as rheumatoid arthritis, breast cancer and diabetes.
“The Patient Engagement Studio provides a structured opportunity for patients, community stakeholders, physicians, and academic researchers to collaborate in planning, conducting and disseminating research results and health system innovations,” says Kennedy, who has directed the studio for the past two years. “We plan to scale-up our existing studio using a virtual model that will allow investigators to reach and engage rural and minority patients and stakeholders in diabetes-focused research. Ultimately, this model can be expanded to include other diseases or health concerns and scaled up at a national level to engage patients in nation-wide, multi-site studies.”
The researchers are still looking for people with diabetes and/or their caregivers to share their views and experiences with the VIP Engagement Studio. Register here to attend a virtual information session or contact Ms. Anna Nourse, Project Coordinator, at ANOURSE@greenvillemed.sc.edu.