the learning health system: democratizing health together
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Joshua C. Rubin, JD, MBA, MPH, MPP
@JoshCRubin
The Learning Health System: Democratizing Health Together
Thursday, April 21, 2016
• Program Officer for Learning Health System Initiatives, Department of Learning Health Sciences, University of Michigan Medical School
• Member of the Interim Steering Committee, Learning Health Community
• Vice President of the Board of Directors, Joseph H. Kanter Family Foundation
Disclosures
Some portions of this presentation were adapted from the work of my colleague and boss, Dr. Charles P. Friedman.
Preliminary Acknowledgement
From left: Donald Kemper, Janet Marchibroda, David Dieterich, George Mitchell, Joe Kanter, Karen Fox, Bob Dole, Sean Tunis, David Kibbe, Gary Filerman, Paul Elwood
HIE Superheroes…
73 Days
50X
http://incubator.rockefeller.edu/the-science-of-empathy/
“e-Patient Dave” Defines Empowerment
$750B
1/3
17 Years
35 Years
3%
11%
(Brailer, 2015)
http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison
The Blame Game…
Too Big to Heal?
“What if your data did not have to die in dusty paper files and unconnected electronic silos? What if many private institutions, non-profit organizations, research centers, government entities and individual patients decided to share data? What if we could do this over a span of years creating an ever larger data set? That data set could be accessed by the many in a timely fashion that will enable both the individual and the organization to make informed health decisions.”– Regina Holliday at the Learning Health System Summit, 2012
A Patient Activist’s Perspective…
“… one in which progress in science, informatics, and care culture align to generate new knowledge as an ongoing, natural by-product of the care experience, and seamlessly refine and deliver best practices for continuous improvement in health and health care.” (IOM)
Learning Health System (LHS)
• Every (consenting) patient’s characteristics and experiences are, in principle, available for study.
• Best practice knowledge is immediately available to support decisions.
• Improvement is continuous through ongoing study.
• This learning happens routinely, economically, and almost invisibly.
• All of this is part of the culture.
A Health System That Learns (Studies Itself)A System of Health Learners…
Infrastructure…
61
61
Patient Groups
GovernanceEngagementData AggregationAnalysisDissemination
Pharma
Universities
Government/Public Health
All-InclusiveDecentralized
ResearchInstitutes
ReciprocalLarge Scale
Tech Industry
LHS Infrastructure: A Single Sociotechnical Platform Supports Multiple Simultaneous Learning Cycles
(Deborah Jackson, NSF)
The LHS Must Do This…
AssembleRelevant Data
Take Action to Change Practice
InterpretResults
AnalyzeData
Deliver Tailored Message
A Problem of Interest
Decision to Study
Not This…
AssembleRelevant Data
Take Action to Change Practice
InterpretResults
AnalyzeData
Deliver Tailored Message
A Problem of Interest
Decision to Study
Journals?
• Technology• Policy• Process• People
The Sociotechnical LHS Platform
• At Any Level of Scale• Effective, Continuous, Routine, and Sustainable
The New Science of Learning Systems
Semantics, Knowledge Representation, and
Management
Decision ScienceCommunication and
Behavior ChangeImplementation Science
Complexity & System Science
EconomicsPolicy Science
Data ScienceMachine Learning
&Analytics
https://www.nitrd.gov/nitrdgroups/images/b/ba/An_Ultra-Large-Scale_Systems_Approach_to_National-Scale_Health_Information_Systems_-p365.pdf
https://lillypad.lilly.com/entry.php?e=8284
www.LearningHealth.org
www.LearningHealth.org
99 Endorsements of the LHS Core Values*(As of 4/18/2016)
The Center for Learning Health Care
Siemens Health Services
GE Healthcare IT
*To be included on the www.LearningHealth.org website.
SecureHealthHub, LLC
Department of Primary Careand Public Health
Program in HealthInformatics, SONHP
Veterans Health AdministrationOffice of Informatics & Analytics
Division of Health and Social Care Research
“In closing, the Learning Health Community movement and perhaps a number of the other multistakeholder organizations implicitly envision as one of their key goals interoperation (as opposed to interoperability, which is a capability versus an outcome) as a driver of better human health. These organizations are about working together to collaboratively realize an infrastructure built upon the fusion of technology, policy, people, and culture that leads to a national system for sharing health data to enable useful and rapid exchange that is governed, organized and operated by different levels of public and private multi-stakeholder collaborations.”– Timothy Pletcher, DHA
www.LearningHealth.org
© CDISC 2015
Learning Cycle –From Concept to Framework to Entities and Activities
HealthcareProviders
Raw Data Analytic Data
Inference
Guidance
Observe, Record
Aggregate, Transform
Analyze
PackageInform
Reality
Learning
Knowledge
Representation
www.LearningHealth.org
“… for those of us who have battled against the weariness and ennui most change agents face in the institutions of government and the healthcare industrial complex, we know that this change has been a long time coming, and it’s too late to stop now.”– Hunt Blair, 2015
www.LearningHealth.org
Thank You!
Joshua C. Rubin, JD, MBA, MPH, MPP
@JoshCRubin