Led by empowered patients and with support from the American Heart Association (AHA), the Health eHeart Alliance will provide an organizational home for the millions of patients in the United States interested in heart disease prevention and management, encourage their participation in heart research, crowd-source their ideas for health interventions, provide patient-centeredness review and prioritization for specific research proposals, and disseminate research findings. The Alliance will be led by UCSF, AHA, Practice Fusion (an innovative nation-wide electronic health record provider), and patient-leaders from StopAfib.org, Mended Hearts, and the Sudden Arrhythmia Death Syndrome (SADS) Foundation.
The Health eHeart Alliance will work hand-in-hand with the Health eHeart Study (HeH) to further their joint mission to end heart disease. HeH, launched by researchers at the University of California San Francisco, is a nationally-scoped, site-free cardiovascular research study designed to enable rapid-cycle, low-cost interventional and observational cardiovascular research that capitalizes on emerging technologies. It supports fully-online and smartphone-based participation, collecting self-reported data and linking it with data from wearable personal sensors and online social networks and other importable “big data,” genomic, and other specimen-derived biologic measurements, and electronic health records. Since March 2013, HeH has enrolled nearly 5,000 people from all 50 states and is poised to launch a major recruitment campaign with the help of its partners. HeH will act as the research implementation arm of the Alliance.
During this project, we will develop a mission statement and governance structure, host a patient power conference, develop five crowd-sourced PPRN-prioritized trial protocols for implementation within HeH, recruit 100,000 participants, build out capacity for electronic health record data capture and analysis, demonstrate DNA collection capabilities, and integrate with the other nodes in the Patient-Centered Outcomes Research Network.
The Health eHeart Alliance will become the hub for cardiovascular health research in the NCRN. Patients with cardiovascular conditions of any type will be welcomed and find an interactive community and opportunities to contribute by participating in research studies, by joining research idea brainstorming sessions with other patients, and by getting involved in PPRN leadership. HeH will provide other PPRNs and CDRNs with a mechanism to collect rich and varied types of data including core cardiovascular measurements on their own patients through co-enrollment and data sharing. And, as an inexpensive platform for testing interventions that will be available for use by outside investigator/collaborators, the Alliance will be a powerful engine for producing, testing, and disseminating innovative patient-centered interventions that improve cardiovascular health.