The Health eHeart Alliance
Mark Pletcher, MD, MPH
University of California San Francisco
Patient-Powered Research Networks
Executive Summary: Who we are now: The Health eHeart Study and partners
Our current team is led by researchers from the University of California, San Francisco who have recently launched an Internet-based cardiovascular cohort study called the Health eHeart Study (HeH). HeH, with help from the American Heart Association (AHA), Practice Fusion, and three patient-advocacy groups, will form the core of a transformative new patient-powered research network (PPRN). Our team can already claim:
- A large group of patients who have provided informed consent to participate in research and provided extensive self-reported cardiovascular health information
- Established vehicles for additional recruitment via commitments from AHA, Practice Fusion, StopAfib.org, Mended Hearts, and the Sudden Arrhythmia Death Syndrome (SADS) Foundation
- All data collection features of an ideal PPRN, including online surveys (many standard instruments), remote monitoring devices (sensors), mobile/online apps, electronic health records (EHR), and a state-of- the-art data system ready to scale up for collection and analysis of "big data"
- Partnership with an innovative EHR provider (Practice Fusion) that can provide communication channels to providers as well as patients and a direct means of delivering interventions for comparative effectiveness research trials, quality improvement programs, and dissemination of research findings
- An infrastructure for conducting very inexpensive trials and observation studies within HeH that can be used by investigators anywhere
What we will become with Phase I funding: An ideal PPRN focused on cardiovascular health Funding from PCORI will support creation of a new PPRN—The Health eHeart Alliance. The Health eHeart Alliance will work hand-in-hand with the Health eHeart Study to generate and test new patient-designed interventions for improving cardiovascular health. With the help of our partners, we have engaged a set of highly motivated patient-leaders, named and described in this application, who will form an Interim Steering Committee for the Alliance. We have committed a large portion of Phase I funding to resource this committee and support a deliberate "design process," with the goal of delivering:
- A conference designed to galvanize enthusiasm for crowd-sourcing cardiovascular research ideas
- A new PPRN organization with a mission statement, defined governance structure, and key policies
- Five specific crowd-sourced and PPRN-prioritized trial protocols ready for implementation within HeH.
- Our funding will support the following additional aims designed to accomplish transition to an ideal PPRN:
- Recruitment of 100,000 patient-participants representing diverse demography and heart-related conditions
- Capacity for "Blue Button" EHR data consumption, an IRB-approved online HIPAA authorization system, and a pilot natural language processing algorithm that adjudicates hospitalization events
- Demonstration of DNA collection capability and willingness of participants to contribute specimens
- Integration with a CDRN and two other PPRNs and collaboration with the NCRN Coordinating Center
Our vision for contributing to the National Clincial Research Network (NCRN): The Health eHeart Alliance will be the hub for cardiovascular health research in the NCRN. Patients with cardiovascular conditions of any type will be welcomed and find a vibrant 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. As a fully functioning research-grade IRB-approved cohort study that is highly engaging to patients, 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 investigators/collaborators, the Alliance will be a powerful engine for producing, testing, and disseminating innovative patient-centered interventions that improve cardiovascular health.