Project Summary
The Health eHeart Alliance is a Patient-Powered Research Network dedicated to preventing and managing cardiovascular disease, the nation’s leading cause of morbidity and mortality. The alliance is supported by the Health eHeart Study, which provides an infrastructure for data collection and study management, and a coalition of heart-related advocacy organizations including the American Heart Association, Mended Hearts, StopAfib.org, and the Sudden Arrhythmia Death Syndromes Foundation. With guidance from a patient-led steering committee, the alliance supports deep patient engagement in the design, conduct, oversight, and results dissemination for cardiovascular-focused research projects, with the goal of furthering its mission to “pioneer new ways to empower patients in improving research, care, and quality of life for heart patients.”
With Phase I funding from PCORI, the Health eHeart Alliance formed a Steering Committee, elected a patient leader as chair, convened working groups, and approved key policies including careful criteria for alliance sponsorship of research projects and a broadly inclusive alliance membership policy (requiring only an interest in cardiovascular research). We hosted a unique patient-powered research summit where patients spent a day in San Francisco turning their personal health experiences into research questions with the help of researchers and other stakeholders. We’ve recruited over 26,000 alliance members, 20,000 of whom have consented to research study participation and are contributing data from online surveys, wearable sensors, smartphone apps, and electronic health records.
With Phase II funding from PCORI, the Health eHeart Alliance will continue our efforts to reach out to a broad community and engage them in cardiovascular research. We plan to develop an online platform where patients can discuss research ideas, co-develop protocols, and disseminate research results. We will host an additional in-person summit and explore ways to bring this experience to more people (e.g., at conferences, online). We will play a central role in PCORnet’s first randomized controlled trial (ADAPTABLE), with the Health eHeart Study hosting the patient portal for the trial and the alliance supporting a patient review board—the adaptors—that will provide oversight and disseminate results. Our research team will work closely with other PCORnet networks to recruit patients with eight conditions—atrial fibrillation, congestive heart failure, coronary heart disease, stroke, cardiac arrest, congenital heart disease, hypertension, and high cholesterol—to join the alliance, sign up for the study, and work with us to design research studies and apply for funding. With its state-of-the-art patient portal and highly effective patient governance and engagement mechanisms, the Health eHeart Alliance is poised to conduct innovative, efficient, patient-centered research and help lead PCORnet into and beyond Phase II.
View Phase I Award
View more about this project on PCORnet.org.
Project Details
Information