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 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 will expand and broaden connections with patients and additional key stakeholders to develop capacity for research and refine the topics of interest currently identified at the Tier 1 meetings (e.g., telehealth/mHealth, youth engagement, lack of patient engagement for diabetes education). The team will expand the IDEAA Collaborative by adding six patients, two regional diabetes coalitions in West Virginia, and additional key stakeholders (healthcare systems people, advocacy groups, insurance providers, and policy makers). 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 will also 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 will assess 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. Completion of the website and resource guide is another projected outcome and the team will quantify the engagement of stakeholders and those contributing to the resource guide. The final projected outcomes include the completion of the research agenda, literature reviews of potential CER questions, and the toolkit.
The team will disseminate the research agenda, literature reviews, and toolkit for a statewide audience as well as the results of its assessment via the website, publications, and meetings. The team will host eight quarterly stakeholder meetings (five face-to-face and three conference calls) and one statewide meeting to develop a research agenda and disseminate a toolkit for engaging patients and stakeholders in research (in the second year). West Virginia University will collaborate with the West Virginia Local Health Inc. and West Virginia Rural Health Association.