Presentation at the PHDSC 2012
Annual Business Meeting
The 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
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Preliminary Acknowledgement
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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.
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Public Health
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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).”
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Standards and Harmonization:
“Who’s Yehoodi?”
“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.”
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“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
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Our Healthcare System is Insane…
One definition of insanity is
doing the same thing over
and over again and
expecting different results
(TopPun)
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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
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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)
Lessons Learnable from Our Collective
Health Experiences
“Let Patients Help!”
“Sharing Saves Lives!”
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Joe Kanter’s Big Idea…
“For an idea that does
not at first seem
insane, there is no
hope.”
-- Albert Einstein
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A National-Scale Learning Health
System (LHS): Some Background
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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.
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A Learning Health System
for the Nation
State Public Health
Pharmaceutical Firm
Community
Practice
Beacon
Community
Federal
Agencies
Governance
Patient Engagement
Trust
Analysis
Dissemination
Integrated
Delivery
System
Health Information Organization
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Health Center
Network
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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
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Our (Collaborative, Self-Organizing, Bottom-Up, “Chaordic”)
Approach to Realizing a National-Scale LHS
“Let’s all work together to give the gift of health to our children and our nation.” – Joe Kanter
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Planning Committee Members
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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
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Stakeholder Groups at the May, 2012
LHS Summit (80+ Participants)
In No Particular Order…
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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
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LHS Core Values
1. Person-Focused
2. Privacy
3. Inclusiveness
4. Transparency
5. Accessibility
6. Adaptability
7. Governance
8. Cooperative and Participatory Leadership
9. Scientific Integrity
10.Value
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Endorsements of the LHS Core Values*
(Early Adopters…)
The Center for Learning Health Care
Siemens Health Services
GE Healthcare IT
*To be included on a Learning Health Community public website that
will list all organizations that have endorsed the LHS Core Values
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Some Links of Interest
• http://kanterhealth.org/featured/2012summit/
• http://healthinformatics.umich.edu/initia
tives/lhs/national-summit
• http://reginaholliday.blogspot.com/2012/
05/word-of-day-is.html
• http://www.phdsc.org
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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
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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
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Thank You!
Questions and Discussion…
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