Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use: A Vision for a Health System that Shares Data for Continuous Improvement August 23, 2019

Initiative Aim 1:10 – 1:20 PM 1:30 – 2:05 PM 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

Initiative Overview 1:10 – 1:20 PM 1:30 – 2:05 PM 12:05 – 12:15 Steering Committee Vision Statement: A steering committee was convened to develop a vision for a health system that shares data for continuous improvement. Met in-person on June 11, 2018 Stakeholder Workgroups: Three stakeholder workgroups (patients, research, executives) were convened to explore the cultural, financial, ethical, and regulatory barriers to data sharing. Stakeholder Convening: On February 7, 2019, the three workgroups met in-person to review the lists of barriers that had been generated, to discuss areas of overlap, and to begin to prioritize the barriers that had been identified. Stakeholder Statements: Workgroups identified solutions for addressing the prioritized barriers and organizations to engage to implement those solutions. Complete stakeholder statements were developed that capture the barriers, solutions, and proposed next steps. Public Meeting: The goal of this meeting is to convene workgroup and steering committee members and outside experts to build partnerships / implement actions steps to achieve the vision of a health system that shares data for continuous learning 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM Remind participants of initiative overview in there folders

Steering Committee 1:10 – 1:20 PM 1:30 – 2:05 PM 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

Vision Statement 1:10 – 1:20 PM 1:30 – 2:05 PM A Vision for a Health System that Shares Data for Continuous Improvement A health care system that shares and applies routinely generated 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

Health-Related Data 1:10 – 1:20 PM 1:30 – 2:05 PM All the information that accumulates about a person or population that may affect health outcomes. This includes: 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 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

Deliverables 1:10 – 1:20 PM 1:30 – 2:05 PM NAM Special Publication: Including the vision statement, the three stakeholder statements, and a concluding chapter of key principles for progress Information Hub: A web page devoted to educating and connecting organizations interested in cross-learning and coordination Consortium of Organizations Committed to Change: Build a consortium of organizations committed to stewarding progress on health data linkage, sharing, and use 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

Anticipated Impact 1:10 – 1:20 PM 1:30 – 2:05 PM Building trust and transparency among stakeholder groups Greater demand, appreciation and capacity for sharing and using data for clinical decision making, quality improvement and continuous learning. Faster progress and collaboration around data linkage and sharing to improve health and health care. 1:10 – 1:20 PM 12:05 – 12:15 1:30 – 2:05 PM

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