Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda

Abstract

The disproportionate burden of cardiovascular diseases (CVD) and associated risk factors continues to exist in the Central Appalachian Region (CAR) of the United States. Previous studies to gather data about patient-centered care for CVD in the region were conducted through focus group discussions. There have not been any studies that used a collaborative framework where patients, providers, and community stakeholders were engaged as panelists. The objective of this study was to identify patient-centered research priorities for CVD in the CAR. We used a modified Delphi approach to administer questionnaires to forty-two stakeholder experts in six states representing the CAR between the fall of 2018 and the summer of 2019. Their responses were analyzed for rankings and derived priorities by research gaps. Six of the fifteen research priorities identified were patient-centered. These patient-centered priorities included shorter wait times for appointments; educating patients at their level; empowering patients to take responsibility for their health; access to quality providers; heart disease specialists for rural areas; and lifestyle changes. The participants’ commitments to identify patient-centered research priorities indicate the potential to engage in community-based collaboration to address the burden of CVD in the CAR.