Joshua Rubin's, MBA, MPP, MPH HIMSS Detroit 2015 presentation.

1. National Learning Health
System Landscape
Joshua C. Rubin, JD, MBA, MPH, MPP
Josh@JoshCRubin.com
@JoshCRubin
Tuesday, October 27, 2015

2. Disclosure of Conflicts of
Interest
• 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

3. Objectives
– Understand the national framework for how the Learning Health
Community is evolving abroad, in the U.S., and within Michigan
– Become familiar with the LHS vision and the multi-stakeholder
consensus LHS Core Values
– Learn about other stakeholders spanning the health arena who
are working toward collaboratively realizing this shared vision;
discover how to join them by participating in the Learning Health
Community movement at a national level or participate in
Learning Health for Michigan (LH4M) effort
– Gain insight into how the research and discovery networks are
poised to integrate with traditional health care delivery data
sharing infrastructure
– Achieve awareness of the new technology and policy
environments and approaches such as PopMedNet™ being
used to enable distributed data sharing, as well as rapid learning
leveraging the power of analytics

4. Preliminary Acknowledgement
Some portions of this presentation were
adapted from the work of my colleague
and boss, Dr. Charles P. Friedman.

5. Welcome (Back) to the
Future…

6. Sir Joe Kanter…

7. Envisioning the Future: 2015

10. National Priorities…
“By a wide margin, the biggest
threat to our nation’s balance
sheet is the skyrocketing cost of
health care. It’s not even close.”
– President Obama, 2009

11. Health IT and Politics…

12. • “Data volume doubles every 2 years and it has
been estimated that every 2 days, more data
are generated than were produced in human
history up to 2003.” – Sacristan et. al., 2015
• “Experts estimate that in five years we will
generate 50 times more health information
than today.” – Brailer, 2015 (WSJ)

13. Movies?

14. The Learning Health System (LHS):
Shared Common Purpose

15. Disruptively Transforming Health…
• Every Health Experience…
• Every Decision Affecting Health…
• Every Person…

16. Some Enablers and Challenges
(Non-Exhaustive)
Some Enablers
• Data
• Much Technology
• Emerging “Islands”
• Some Components
• Priority
• Willpower (Global)
• Imperative/Urgency
Some Challenges
• Fragmentation/Silos
• Misaligned Incentives
• Asymmetric Information
• Resources
• Trust Fabric
• Science
• Culture

18. Fusion…
“In nuclear physics, in conceptualizing
ideas and merging disciplines, in
political theater, and in human
interactions, fission (splitting apart) is
easier than fusion (bring together),
but fusion is far more powerful.
Fusion is the reaction that sustains
the energy of the sun that illuminates
our world and is the force that will be
responsible for driving transformative
changes, such as realizing the LHS
vision. It is generally easier to divide
apart, to point to scapegoats, to
envision the world as a series of zero-
sum games, and to derive short term
benefits from doing so. But for the
LHS vision to be realized, fusion will
be an essential component.”

19. The Impact of NOT Learning – If Our
Healthcare System Were a Company…
• CEO – We spend way more than our peers and rank next to last on key indicators of being “high-
functioning” (and we’re comparatively inefficient).
• CFO – We waste 30 cents of every dollar we spend (totaling $750 billion per year – larger than all but 18
countries’ GDPs); we hand 10 cents to criminals.
• CIO – We throw away 97% of the experience data needed to address our #2 killer (our #1 killer would give
you a heart attack).
• CKO – We only use “level A” evidence 11% of the time; overall, only 20% of this “knowledge” utilized is
evidence-based.
• Diversity – Not even close to representative…
• Customer Relations – Over 45% of our customers do not get the service (care) recommended; when they
do get what is recommended, in certain cases, it works only 20%-30% of the time.
• Safety Officer – We used to believe preventable mistakes killed 98,000 consumers (patients in hospitals)
per year, but new studies suggest that figure could be as high as 400,000.
• Quality Control – Quality improves at around 2% annually (*2 in 35 years).
• Mail Room – It takes about 17 years; lethally slow, falling 400+ years behind.
• PR – Infant mortality (compare with other nations).
• Human Resources – We have extraordinary people, but difficulty organizing and getting them the resources
and information they need and desire.
• Child Care – Has a solution…

21. “There is a growing recognition of the US healthcare system’s inability
to routinely study its own behaviour; an LHS would provide such
capability, and would significantly address many of the current
challenges faced by the system.”

23. The LHS Vision
“… 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)

25. Harnessing the Spirit of Sharing to
Transform Human Health…
“The LHS vision captures that spirit and marries technology, incentives,
governance, and culture to transform health care by empowering every
individual who wants to be involved to seamlessly share his/her experiences
(and to do so while protecting his/her privacy). It enables all stakeholders to
learn from the experiences of every patient and to share lessons learned to
make more informed decisions in contexts ranging from public health to disease
surveillance to research to clinical practice to patient empowerment… I believe
over time the LHS can transform health care and health in ways paralleling the
Internet’s transformation of commerce and communication.”

26. A Health System that Learns
(that Can Study Itself)…
• 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.

27. The LHS: One Shared Infrastructure
Routinely Enables…
• Pursuit of Best and Safer Care at Lower Cost: Communities of
interest discover what interventions are most cost-effective and are
supported in implementing them.
• Enhanced Public Health: During an epidemic, new cases are
reported directly from EHRs, the spread of the disease is predicted,
and clinicians are alerted.
• Consumer Empowerment: Patients facing difficult health decisions
discover the experiences of other patients like them.

28. The LHS Platform
Mechanisms for
managing
communities of
interest

29. Learning from Every Experience of
Every (Consenting) Patient…
• Technology
• Policy (Including Governance and Incentives)
• Process
• People
• Culture

30. Emergent…
https://www.nitrd.gov/nitrdgroups/images/b/ba/An_Ultra-Large-Scale_Systems_Approach_to_National-Scale_Health_Information_Systems_-p365.pdf

31. The Birth of a Multi-Stakeholder
Grassroots Movement…
• National “LHS Summit” convened in May, 2012 to envision LHS as
set of shared beliefs, sponsored by the Joseph H. Kanter Family
Foundation
• A Dumbarton Oaks conference for the LHS
• ~ 70 organizations represented at The National Press Club in
Washington, DC
• Resulted in 10 consensus LHS Core Values
• To date, over 80 organizations have formally endorsed, hundreds of
individuals are participating in the movement
• Giving rise to a Learning Health Community (and initiatives)
www.LearningHealth.org

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

33. An Unstoppable Force for Health: What
the Multi-Stakeholder Learning Health
Community Does…
• “Together”
• Spreading the vision (and the urgency)
• Growing the movement and mission
• Collaboration environment
• Initiatives
www.LearningHealth.org

34. Essential Standards/Structures to
Enable Learning (ESTEL) Initiative
LHS Policy and Governance
Framework Initiative
Learning Health Community
Multi-Stakeholder Initiatives
www.LearningHealth.org

37. Two Early Endorsers…

39. 91 Endorsements of the LHS Core Values*
(As of 9/29/2015)
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 Care
and Public Health
Program in Health
Informatics, SONHP
Veterans Health Administration
Office of Informatics & Analytics

40. LHS Fever: Words

41. www.LearningHealth.org

42. “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

43. LHS Fever in Action
• Learning enablers
• Learning “islands” and projects
• Data federations and networks
• Grant programs

44. “It was a joy to behold. A bureaucrat who sees the power of IT
to righteously cut through silos! That, my friends, is a sign of
significant change. The health and human services
infrastructure we’ve been struggling to implement and improve
is finally beginning to converge in functional operation, and
leadership recognizes its value. States like Michigan have much
to teach us about bringing data sharing to national scale.”
– Hunt Blair, 2015

45. #DataSavesLives (UK)

46. The LHS Vision Going Global…

47. “The authors and the workshop participants recognized that
addressing the deep scientific questions related to the LHS—many of
which will be anchored in the new envisioned science of cyber-social
ecosystems—will require not only collaboration among multiple and
diverse stakeholder types, but will also require research, learning, and
innovation to occur at the intersection of multiple and diverse
disciplines.”

48. A (Disruptive) New Paradigm?
(William Stead, 2015)

50. The LHS as a Big, Hairy,
Audacious Goal (BHAG):
“At the heart of the LHS
vision is a fundamental
question: how do we
catalyze, sustain, and
continually advance a
massive socio-technical
transformation of a
system touching
everyone’s life and health
and encompassing over
one-sixth of a nation’s
economy when such a
transformation will take
years or decades, likely
requires the participation
of - or at least affects -
stakeholders inside and
outside of healthcare,
and is urgently needed.”

51. Foundational Elements are Assembling…
1. Words: calls, reports, and policies
2. Digital health data and enablers
3. Learning “islands”
4. Research networks
5. Grant programs
6. A first academic department
7. A multi-disciplinary scientific community
8. A multi-stakeholder grassroots movement (and initiatives)

52. “Let’s all work together to give the gift of health
to our children and our nation.”
• Envisioning the future; what is right?
• How do we collaboratively to realize this vision?
• Why is doing so (together) urgent?
www.LearningHealth.org

53. Two Questions to Consider*
1. What can a LHS
do for me?
2. What can I do
for a LHS?
*In your role as a health/informatics professional, as a
patient/caregiver, as a citizen, and in other roles.

54. Thank You!
Joshua C. Rubin, JD, MBA, MPH, MPP
Josh@JoshCRubin.com
@JoshCRubin
www.LearningHealth.org

55. “… 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