Presentation at the PHDSC 2012 Annual Business Meeting T he Learning Health System and the Learning Health Community

1. Presentation at the PHDSC 2012 Annual Business MeetingThe Learning Health System and the Learning Health Community Joshua C. Rubin, JD, MBA, MPH, MPP Executive Director Joseph H. Kanter Family Foundation Thursday, November 8, 2012

2. Preliminary Acknowledgement • Some portions of this presentation were adapted from the Learning Health System Summit: Background Briefing Slides prepared by Charles P. Friedman, PhD for the Joseph H. Kanter Family Foundation (KFF) in April, 2012. • KFF is grateful to Dr. Friedman for his pro bono service as Chair of the Planning Committee.

3. Public Health

4. PHDSC Strategic Plan 2012-2014: Towards Public Health Sector Transformation and Unity “PHDSC envisions a transformation in the United States over the next 10 to 15 years, from today’s disease‐based model to a health‐based model of care (HBM) committed to continuous learning from data generated in the course of practice, i.e. an integrated Learning Health System (LHS). PHDSC’s vision is shared by a number of prestigious organizations, including the National Committee on Vital and Health Statistics (NCVHS) and the Institute of Medicine (IOM).”

5. Standards and Harmonization: “Who’s Yehoodi?” Crisis “Music creates order out of chaos: for rhythm imposes unanimity upon the divergent, melody imposes continuity upon the disjointed, and harmony imposes compatibility upon the incongruous.”

6. “In My Experience…” “It is impossible for me as a physician to deliver good care (and neither can any other physician)... It is impossible for me to provide the information that patients want when they come to see me. It’s absolutely impossible, even though I’d like to do it, as would virtually all physicians. It is also impossible for patients to make good decisions about their care without this kind of information.” -- Robert Brook, MD, ScD, RAND Health and UCLA

7. Our Healthcare System is Insane… One definition of insanity is doing the same thing over and over again and expecting different results (TopPun)

8. How Health Information Technology (IT) Fits in… Health IT as a key to unlocking the collective power of individuals: • To improve health • To save lives • To advance patient safety • To protect the public’s health • To revolutionize biomedical research • To redefine our patient experience • To transform our healthcare system

9. We are the Key to the Cure: Two of the Least Well Utilized Resources in Healthcare Patients and Caregivers Ourselves (NOTE: Everyone will be a Patient) “Let Patients Help!” Lessons Learnable from Our Collective Health Experiences “Sharing Saves Lives!”

10. Joe Kanter’s Big Idea… “For an idea that does not at first seem insane, there is no hope.” -- Albert Einstein

11. A National-Scale Learning Health System (LHS): Some Background

12. A Learning Health System will Make These Things Possible “17 years to 17 months, or maybe 17 weeks or even 17 hours…” • Nationwide post-market surveillance of a new drug quickly reveals that personalized dosage algorithms require modification. A modified decision support rule is created and is implemented in EHR systems. • During an epidemic, new cases reported directly from EHRs. As the disease spreads into new areas, clinicians are alerted. • A patient faces a difficult medical decision. She bases that decision on the experiences of other patients like her.

13. Federal Agencies Beacon Community A Learning Health System for the Nation Pharmaceutical Firm State Public Health Community Practice Governance Patient Engagement Trust Analysis Dissemination IntegratedDelivery System Health Information Organization 13 Health Center Network 13

14. The National-Scale LHS: One Reusable Infrastructure that Supports • Research • Clinical • Comparative effectiveness • Translational • Public Health • Surveillance • Situational awareness • Interventions • Quality Improvement • Health process and outcomes research • Best practice dissemination

15. Our (Collaborative, Self-Organizing, Bottom-Up, “Chaordic”) Approach to Realizing a National-Scale LHS Planning Committee Learning Health Community “Let’s all work together to give the gift of health to our children and our nation.” – Joe Kanter

16. Planning Committee Members • Kate Berry, National eHealth Collaborative (Joined 8/31/2012) • David Blumenthal, Partners HealthCare • Harry Cayton, Council for Healthcare Regulatory Excellence UK (Joined 5/21/2012) • Charles Friedman, University of Michigan (Chair) • Claudia Grossmann, Institute of Medicine • Robert Kolodner, Open Health Tools • Rebecca Kush, Clinical Data Interchange Standards Consortium • Kevin Larsen, Office of the National Coordinator for Health IT (Joined 7/18/2012) • Allen Lichter, American Society for Clinical Oncology • Janet Marchibroda, Bipartisan Policy Center • Michael McGinnis, Institute of Medicine • Rachel Nelson, Office of the National Coordinator for Health IT (Joined 7/18/2012) • Marc Overhage, Siemens Healthcare • Frank Rockhold, GlaxoSmithKline • Joshua Rubin, Joseph H. Kanter Family Foundation • Jonathan Silverstein, NorthShore University HealthSystem • Richard Tannen, University of Pennsylvania • James Walker, Geisinger Health System • Joseph Kanter, Joseph H. Kanter Family Foundation, Ex Officio

17. Stakeholder Groups at the May, 2012 LHS Summit (80+ Participants) In No Particular Order… • Academic Health Centers and Care Provider Networks • Advocacy and Patient/Consumer Organizations • EHR and Health IT Vendors • Government Agencies • Payer Organizations • Pharmaceutical Industry • Philanthropic Organizations • Professional Associations • Research Initiatives and Organizations

18. LHS Core Values • Person-Focused • Privacy • Inclusiveness • Transparency • Accessibility • Adaptability • Governance • Cooperative and Participatory Leadership • Scientific Integrity • Value

19. Endorsements of the LHS Core Values*(Early Adopters…) Lewin and Associates LLC The Center for Learning Health Care Siemens Health Services GE Healthcare IT 2012 *To be included on a Learning Health Community public website that will list all organizations that have endorsed the LHS Core Values

20. Some Links of Interest • http://kanterhealth.org/featured/2012-summit/ • http://healthinformatics.umich.edu/initiatives/lhs/national-summit • http://reginaholliday.blogspot.com/2012/05/word-of-day-is.html • http://www.phdsc.org

21. Contacts Joshua C. Rubin, JD, MBA, MPH, MPP Executive Director Joseph H. Kanter Family Foundation E-mail – Josh@JoshCRubin.com Charles P. Friedman, PhD Professor and Director of Health Informatics Schools of Information and Public Health University of Michigan E-mail – cpfried@umich.edu

22. Our Shared Health Legacy: “Together We Will!” “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” -- Margaret Mead

23. Thank You! Questions and Discussion…