Joshua Rubin, Program Officer for Learning Health System Initiatives within the Department of Learning Health Sciences, was an invited speaker at Techweek Detroit 2015 at Ford Field. (http://techweek.com/schedule/detroit/). For more about the department, go to http://LHS.medicine.umich.edu/

1. Bigger Than Big Data:
The Learning Health System as a
Transformational Foundation for
Continuous Innovation and
Entrepreneurship in Health
Thursday, April 16, 2015
Joshua C. Rubin, JD, MBA, MPH, MPP
rubinjc@umich.edu
LHS.medicine.umich.edu

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

4. Thank You!

6. Michigan’s Technological
Entrepreneurship, Innovation, and
Resilience Empower People to
Transform the World
Impacts transcend the original innovations…

7. Steve Jobs (1955-2011)
Saluting the Crazy Ones…

8. Incentivizing and Empowering Technology
Entrepreneurs and Innovators…

9. The Mass-Produced Automobile:
Invented One Century Ago in Michigan
• Impacts of the invention itself on its domain
• Impacts of the infrastructure created
• Impacts of the frameworks for collaboration created
• Impacts of the lessons learned to realize the invention

10. What About the Internet?
• What the “galactic network” concept of the 1960s grew into…
• How a foundation for continuous innovation unleashed the
imaginations of billions of people…
http://www.forbes.com/asap/2000/1127/105_print.html
http://www.internetsociety.org/internet/what-internet/history-internet/brief-history-internet
http://www.techeblog.com/index.php/tech-gadget/internet-history

11. “In the long run the only sustainable
competitive advantage is your
organization’s ability to learn faster
than the competition.”

12. Our Nation’s $3+ Trillion Health
Sector Urgently Needs Such
Transformative Innovation
We can no longer afford not to seize such opportunities for
business entrepreneurship and social entrepreneurship, not
to learn, and not to try…

13. “Unsustainable” – We Cannot Afford NOT
to Do This!
“The price of doing the same
old thing is far higher than the
price of change.”
– Former President Bill Clinton

15. Today’s Non-Learning Non-Health Non-
System…
• Instead of being available for study, data from patients’
experiences reside in silos.
• Instead of being readily available to support decisions, best
practice knowledge resides in journals where it sits for 17
years before it is widely adopted.
• Instead of studies being continuous, “studies” are separated
from practice.
• Instead of being routine and inexpensive, the studies we do
are cumbersome and cost-prohibitive.
• Instead of a “safety culture” valuing continuous improvement,
we have a “blame” culture that hides the events we need to
know about in order to learn from them.

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

17. 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…

18. We Waste More in Healthcare…
Than We Spend on Public Education

19. This Situation Really is Criminal…

20. An (Unhealthy) Inconvenient
Truth: “The Witching Hour”

21. To Err is Human… But Could We do a
Better Job of Learning from Our
Mistakes?

22. The Plight in Figures – Global
Comparisons…

23. Spending Without Learning (Without
Knowing “What Works”)…

24. The Cost of Learning is Too High
Learning is Too Inefficient

25. The Person-Centered Learning
Health System (LHS) Vision
Bigger than big data…

26. The Big Idea…
“For an idea that does not at first seem
insane, there is no hope.”
-- Albert Einstein

27. Not Having to Reinvent the Wheel:
Decreasing the Marginal Cost of Innovation

28. The Learning Health System (LHS)
“… 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)

29. Joe Kanter’s Vision: What the LHS Does…
• (A data-driven entrepreneur’s approach…)
• Electronically captures data from millions of
patients’ real-world health experiences
• Shares this data so researchers can learn
from it
• Shares lessons learned so clinicians and
patients can be empowered (to make better
decisions) with scientific knowledge on “what
works best in every disease”

30. “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

31. A Health System that Learns…
• 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.

32. A Learning System 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.

33. • Research
– Clinical
– Comparative effectiveness
– Translational
• Public Health
– Surveillance
– Situational awareness
• Quality Improvement
– Health process and outcomes research
– Best practice dissemination
• Consumer Engagement
– Knowledge-driven decision making
The National LHS: One Infrastructure that Supports
March 5, 2013

34. “Learning How to Learn”
(and Breaking Down Barriers to
Continuous Learning…)

35. 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.”

36. The Spirit Underpinning the LHS:
Everyone will be a Patient/Caregiver
“Regina (Holliday) organized a Partnership with Patients Summit
around two years ago. It was one of few events I’ve participated in
where virtually everyone who spoke could be considered an inspiration
and a hero — though most would be too humble to accept the moniker.
Each shared his/her health care story with incredible courage and
compassion. While I wouldn’t wish what some of these people and
their loved ones have been through on anyone, it was remarkable to
see how the more challenging the experiences became, the stronger,
more unwavering, and more giving the individual who lived through
them grew. One was more determined than the next to share his/her
experiences in order to protect and improve the health of others. This
type of moral courage coupled with Lincolnesque perseverance is what
really brings about disruptive reshaping of the world even in the face of
seemingly insurmountable odds.”

38. Harnessing that Spirit 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.”

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

40. Democratizing (Public) Health:
Empowering Millions to Participate…

41. Not Reinventing the Wheel Every Time…

42. The LHS Vision: Potential Far-Reaching
Transformative Impacts…
• Impacts of the LHS on the health of individuals, communities,
and populations (and the fiscal health of the system itself)
• Impacts of the infrastructure created – empowering
continuous learning, improvement, and innovation
• Impacts from the multi-stakeholder collaborative community
(communities) of interest, social capital, and movement
catalyzed
• Impacts of the new cross-disciplinary science of learning
systems/cyber-social ecosystems in innovatively addressing
societal challenges beyond the health domain
“Let’s all work together to give the gift of health to our children and our
nation.” – Joe Kanter
“Let’s all work together to give the gift of health to current and future
generations, across our nation and around the world.” – Joe Kanter

43. Developments Taking Shape
Toward Collaboratively Realizing
the LHS Vision
Synergistically harmonizing the efforts of multiple and
diverse stakeholders into something transformative…

44. Show Me the Money…

46. Learning about Patients?
Learning from Patients?
Learning for Patients?

47. http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison

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

49. A “Chaordic” Revolution?
http://www.epatientdave.com/2012/06/03/information-at-the-point-where-its-needed-can-save-a-life-new-speech/

50. The Learning Health Community:
Interim Steering Committee Members
• Holt Anderson, North Carolina Healthcare Information and Communications Alliance, Inc.
• Kate Berry, National eHealth Collaborative
• Jeffrey Brown, Harvard Pilgrim Health Care Institute
• Harry Cayton, Professional Standards Authority for Health and Social Care UK
• Charles Friedman, University of Michigan (Interim Chair)
• Claudia Grossmann, Institute of Medicine
• Robert Kolodner, ViTel Net and Open Health Tools
• Rebecca Kush, Clinical Data Interchange Standards Consortium (Ex Officio)
• Allen Lichter, American Society of Clinical Oncology
• Janet Marchibroda, Bipartisan Policy Center
• Frank Rockhold, GlaxoSmithKline
• Joshua Rubin, University of Michigan
• Jonathan Silverstein, NorthShore University HealthSystem
• Richard Tannen, University of Pennsylvania
• James Walker, Siemens Healthcare
www.LearningHealth.org

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

52. 73 Endorsements of the LHS Core Values*
(As of 3/23/2015)
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

53. Envisioning a Learning Health System for
Michigan – Draft Vision Statement Excerpt
“We must take advantage of this
opportunity to build a viable
structure while developing
statewide policies that support a
continuous learning environment.
It seems fitting for the state that
transformed our nation’s
transportation, production, and
distribution systems by inventing
the mass-produced automobile a
century ago to now lead with a
model of transforming healthcare
and health in the 21st century.”

54. Creating a Learning Health State in Michigan:
Summit Planning Group (July, 2014)
• Gina Buccalo, St. John Providence Health System
• Jim Collins, Michigan Department of Community Health
• Charles Friedman, University of Michigan
• Babette Levy, Center for Healthcare Research & Transformation
• Patrick O’Hare, Spectrum Health System
• Tim Pletcher, Michigan Health Information Network
• Andrew Rosenberg, University of Michigan Health System
• Joshua Rubin, University of Michigan
• Dennis Smith, Upper Peninsula Health Plan
• Tom Simmer, Blue Cross Blue Shield of Michigan
• Marianne Udow-Phillips, Center for Healthcare Research & Transformation
• Meghan Vanderstelt, Michigan Department of Community Health

55. LHS Fever: Words

56. www.LearningHealth.org

57. A Further Testament…

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

59. 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)

60. Realizing the LHS (by Going Far
and Fast, Together)
Creating and seizing opportunities to make sustainable and
synergistic impacts…

61. Emergent…

62. Our Collective Challenge…

63. 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 technology entrepreneur, as
a patient/caregiver, as a citizen, and in other roles.

64. “Let’s All Work Together to Give the Gift
of Health…”