The Health eHeart Alliance

Principal Investigator

Mark Pletcher, MD, MPH

Organization

University of California San Francisco

Funding Announcement

Patient-Powered Research Networks

State

California

Requested Project Budget*

$999,534

Year Awarded

2013

Project Period*

1.5 Years

Project Summary

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.

*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.

PCORI Funding Awards

PCORI has approved 279 awards totaling more than $464.4 million to fund patient-centered comparative clinical effectiveness research projects to date.

View Awards →


News Room

 

... more

News Room →