Background: South Carolina ranks fifth highest in the United States in diabetes prevalence, with major racial and geographic disparities. While over one-third of the South Carolina population consists of people who are minorities or live in rural areas, engagement of patients from these communities in research remains limited, in part due to transportation and other access issues.
Proposed Solution: The project team is proposing a VIrtual Patient engagement (VIP) Studio as a solution to persistent problems with current studio efforts relating to the engagement of hard-to-reach population groups. The proposed solution has potential to expand the participation of these patient groups, providing patient perspectives on health issues in diabetes mellitus that are more representative of the patient population afflicted with this condition.
Objective: To build capacity for and implement a diabetes-focused VIP Studio (with emphasis on geographically dispersed and hard-to-reach patients in South Carolina) to facilitate engagement efforts along the continuum of diabetes CER/PCOR. Goals include:
- Building a diverse network of geographically dispersed VIP Studio patient experts (VIPs) who can serve as experts with lived experiences of diabetes and can be meaningfully involved in the VIP Studio;
- Training recruited VIPs and implementing the VIP Studio activities by engaging VIPs in ongoing and new PCOR/CER research opportunities; and
- Evaluating the virtual experience and disseminating the capacity-building plan to expand and replicate the VIP Studio among other PCOR partners
- Engaging diverse VIPs, ensuring representation of hard-to-reach patients
- Selecting technology platforms and co-developing training modules based on the team’s Building Trust in Patient Engagement Research Toolkit
- Conducting in-person and virtual training sessions for VIPs
- Running VIP Studio sessions for CER/PCOR projects using virtual delivery methods where VIPs will review up to five total projects
- Filming short clips to share patient experiences
- Assembling a joint meeting of VIPs, stakeholders, and researchers to evaluate, document, and disseminate the experience and ensure sustainability and future planning
Outcomes and Outputs (projected):
Short-term: Recruitment of 25 virtual patient experts (VIPs) who participate in trainings for virtual engagement.
Medium-term: VIP Studio is developed and implemented for up to five projects and three short videos created of their virtual engagement experience.
Long-term: The VIP Studio model provides guidance for virtual engagement that extends beyond South Carolina and facilitates engagement in nationwide, multi-site studies where each site may be enrolling patients from geographic areas that may have concerns unique to that region.
Outputs: Training materials, a scholarly manuscript, general audience infographic, short videos, and a written report detailing learnings from the process of establishing a virtual engagement studio.
Patient and Stakeholder Engagement Plan: A VIP Studio stakeholder advisory board (SAB) has been assembled and is comprised of nine members: four patient experts, four researchers with expertise in PCOR/CER and eHealth, and a clinician from the healthcare system. The SAB will meet at least quarterly to inform and collaborate with the project core team and provide support and feedback on the engagement strategies, recruitment methods and locations, technology used, and other activities.
Project Collaborators: Prisma Health, the largest not-for-profit health system in South Carolina.