The West Virginia Diabetes Collaborative (WVDC) is comprised of interdisciplinary and diverse stakeholders and patient partners to develop patient-centric diabetes projects for rural adults with diabetes in West Virginia. The WVDC used a patient-centered participatory design approach and engagement of all stakeholders and patient partners (individuals with diabetes) to develop a toolkit for engaging patients and stakeholders to advance a patient-centric diabetes research agenda for the state of West Virginia.
Project Summary
The West Virginia Collaborative for Improving Diabetes Education and Awareness Advisory (IDEAA) was formed in 2017. It is a statewide network of patient partners, caregivers, diabetes educators, physicians, health services and outcomes researchers, faith-based organizations, and community agencies in West Virginia. The collaborative’s mission is to transform the healthcare services and education for preventing diabetes and its complications. This Engagement Award project builds on the work of a prior Patient-Centered Outcomes Research Institute Pipeline to Proposal Tier I award. In Tier I, the project team convened two all-day meetings with participation from 16 stakeholders representing caregivers, diabetes educators, physicians, health services and outcomes researchers, faith-based organizations, and local and state health departments in West Virginia.
In addition, a survey was conducted to get a preliminary idea of patient issues. Two six-hour stakeholder meetings helped to identify and prioritize a list of ideas and concepts around diabetes prevention and management. The long-term objective of the IDEAA Collaborative (now WV Diabetes Collaborative) is to develop a research agenda that is responsive to the needs of individuals with diabetes and those at risk (prediabetes). To achieve this objective, the project team has expanded and broadened connections with patients and additional key stakeholders to develop capacity for research and refine the topics of interest that were identified at the Tier 1 meetings (e.g., telehealth/mHealth, youth engagement, lack of patient engagement for diabetes education). The team also aims to use the enthusiasm the project has generated from patients and stakeholders to support additional patient-engaged comparative effectiveness research (CER) and patient-centered outcomes research (PCOR) related to diabetes disparities for West Virginians.
This project has also endeavored to build statewide capacity and engage diverse stakeholders, open channels of communication, and prepare stakeholders to be part of future diabetes research teams. To assess the statewide capacity for developing potential PCOR and CER questions, the team regularly assesses the willingness and responsiveness of stakeholders to join a research team, patient and stakeholder participation in meetings, number of trainings participated in and completed, as well as contribution to the development of potential research questions. Achievement of these objectives is critical for sustained stakeholder participation in PCOR and CER. The final projected outcomes include the completion of the research agenda, literature reviews of potential CER questions, and the toolkit for patient engagement in research.
The team has begun disseminating the toolkit for to a statewide audience as well as the results of its assessments via the website and meeting presentations. By the end of the current project period, eight quarterly stakeholder meetings and one statewide meeting to disseminate a toolkit for engaging patients and stakeholders in research will have been completed.
Our leadership team and stakeholders met for our final meeting on November 18th, 2021 at the Stonewall Resort.