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Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use :

This initiative aims to generate stakeholder support and demand for leveraging and sharing health data for continuous learning and improvement in healthcare. The vision is to create a health system that routinely shares and applies health data to transform health, healthcare, and health equity, while enhancing stakeholder trust, experience, and transparency in system performance.

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Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use :

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  1. Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use: A Vision for a Health System that Shares Data for Continuous Improvement September 30, 2019

  2. Initiative Aim • To transform the development of evidence and application of care innovations by generating stakeholder support and demand for leveraging and sharing data for continuous learning. • A focus on the support and demand function: • While we have the technological ability to share electronic data to support improvements in health care, major cultural, ethical, regulatory, and financial barriers still exist • Driving support and demand among key stakeholder groups can be a catalyst for addressing those existing cultural and political barriers 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  3. Vision Statement A Vision for a Health System that Shares Data for Continuous Improvement A health system that shares and applies routinely generated health data and information to support continuous learning to transform health, health care, and health equity, and does so in a manner that enhances stakeholder trust, experience, and transparency in system performance. 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  4. Health Data • All the information that accumulates about a person or population that may affect health outcomes. This includes but is not limited to: • health data generated during clinical encounters and stored in electronic health records or other data systems (Sharfstein et al., 2017); • health insurance claims data; • data gathered from clinical and health services research; • genomic, proteomic, and immunomic data; • data related to the social and environmental determinants of health collected during clinical encounters or outside of the health care system through community, state, and federal organizations; and • patient-generated health data, which has been defined as health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) (ONC, 2018). 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  5. Initiative Overview 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  6. Barriers and Solutions to Facilitate Health Data Sharing 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  7. Deliverables and Next Steps • Deliverables: • NAM Special Publication: Including the vision statement, the three stakeholder statements, and a concluding chapter of key principles for progress • Consortium of Organizations Committed to Change: Build a consortium of organizations committed to stewarding progress on health data linkage, sharing, and use • Next Steps: • Develop a series of high priority data sharing use cases/exemplars to demonstrate the benefits • Create a business case to demonstrate the value of data sharing for health care organizations • Convene non-health care IT experts along with health care leaders to develop innovative solutions to promote data sharing, linkage, and use 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

  8. 1:10 – 1:20 PM 12:05 – 12:15 Q&A, Open Discussion 1:30 – 2:05 PM

  9. Steering Committee • Erin Mackay, National Partnership for Women & Families (co-chair) • Peter Margolis, Cincinnati Children’s Hospital (co-chair) • Helen Burstin, Council of Medical Specialty Societies • Kristin Carman, Patient-Centered Outcomes Research Institute • Christine Grady, National Institutes of Health • Adrian Hernandez, Duke University Medical Center & DCRI • Rainu Kaushal, Weill Cornell Medical College & New York-Presbyterian Hospital • C. Daniel Mullins, University of Maryland School of Pharmacy • Bradley Malin, Vanderbilt University • Richard Platt, Harvard University & Harvard Pilgrim Health Care Institute • Joe Selby, Patient-Centered Outcomes Research Institute • Michelle Schreiber, Centers for Medical and Medicaid Services • Mona Siddiqui, Department of Health and Human Services • Paul Wallace, AcademyHealth • Hugo Campus, California Precision Medicine Initiative • Deven McGraw, Ciitizen Corporation • Adnan Munkarah, Henry Ford Health System 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

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