Meaningful “Re-Use” of Health Data:

Confronting and Resolving the Policy and Ethical Issues

Panelists

• Julia Bernstein - Business Development & Strategy, Ginger.io• David Goldsmith - Executive Director, Dossia• Raffaella Hart, CIP – VP, IRB and IBC Services, Biomedical Research

Alliance of New York• Arthur Levin – Co-Founder and Director, Center for Medical Consumers• Patrick Roohan – Director of the Office of Quality and Patient Safety (OQPS),

New York State Department of Health

• Deven McGraw – Partner, Manatt, Phelps & Phillips (LLP) (Moderator)

Topics to Explore

• Digital health data explosion –where are the opportunities? What’s happening today and what’s on the horizon?

• How do we define “health” data?• What are concerns about how

health data may be used/re-used –and how do can we address those concerns?

• Do we have sufficient incentives to achieve maximum public benefit from health data re-use?– If not, what needs to happen or

change?• What are effective strategies for

building a trusted, digital health data sharing environment?

A continuously learning health care systemThe vision

• Science and informatics- Real-time access to knowledge- Digital capture of the care experience

• Patient-clinician partnerships- Engaged, empowered patients

• Outcomes-oriented incentives- Incentives aligned for value- Full transparency on outcomes, costs

• Continuous learning culture- Leadership-instilled culture of learning- Supportive system competencies