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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, [email protected]
LHS.medicine.umich.edu
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
Preliminary Acknowledgement
Some portions of this presentation were adapted from the work of my colleague and boss, Dr. Charles P. Friedman.
Thank You!
Michigan’s Technological Entrepreneurship, Innovation, and Resilience Empower People to Transform the WorldImpacts transcend the original innovations…
Steve Jobs (1955-2011)
Saluting the Crazy Ones…
Incentivizing and Empowering Technology Entrepreneurs and Innovators…
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
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.htmlhttp://www.internetsociety.org/internet/what-internet/history-internet/brief-history-internethttp://www.techeblog.com/index.php/tech-gadget/internet-history
“In the long run the only sustainable competitive advantage is your organization’s ability to learn faster than the competition.”
Our Nation’s $3+ Trillion Health Sector Urgently Needs Such Transformative InnovationWe can no longer afford not to seize such opportunities for business entrepreneurship and social entrepreneurship, not to learn, and not to try…
“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
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.
Our Healthcare System is Insane…
One definition of insanity is doing the same thing over and over again and expecting different results
(TopPun)
The Impact of NOT Learning – If Our HealthcareSystem 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…
We Waste More in Healthcare…
Than We Spend on Public Education
This Situation Really is Criminal…
An (Unhealthy) Inconvenient Truth: “The Witching Hour”
To Err is Human… But Could We do a Better Job of Learning from Our Mistakes?
The Plight in Figures – Global Comparisons…
Spending Without Learning (Without Knowing “What Works”)…
The Cost of Learning is Too HighLearning is Too Inefficient
The Person-Centered Learning Health System (LHS) VisionBigger than big data…
The Big Idea…
“For an idea that does not at first seem insane, there is no hope.”-- Albert Einstein
Not Having to Reinvent the Wheel: Decreasing the Marginal Cost of Innovation
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)
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”
“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
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.
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.
• 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
“Learning How to Learn”(and Breaking Down Barriers to Continuous Learning…)
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.”
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.”
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.”
Learning from Every Experience of Every Patient…
• Technology• Policy (Including Governance and Incentives)• People• Culture
Democratizing (Public) Health: Empowering Millions to Participate…
Not Reinventing the Wheel Every Time…
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
Developments Taking Shape Toward Collaboratively Realizing the LHS VisionSynergistically harmonizing the efforts of multiple and diverse stakeholders into something transformative…
Show Me the Money…
Learning about Patients?Learning from Patients?Learning for Patients?
http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison
LHS Core Values
• Person-Focused• Privacy• Inclusiveness• Transparency• Accessibility• Adaptability• Governance• Cooperative and Participatory Leadership• Scientific Integrity• Value
www.LearningHealth.org
A “Chaordic” Revolution?
http://www.epatientdave.com/2012/06/03/information-at-the-point-where-its-needed-can-save-a-life-new-speech/
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
Essential Structures to Enable Learning (ESTEL) Initiative
LHS Policy and Governance Framework Initiative
Learning Health Community Multi-Stakeholder Initiatives
www.LearningHealth.org
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 Careand Public Health
Program in HealthInformatics, SONHP
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.”
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
A Further Testament…
LHS Fever in Action• Learning enablers• Learning “islands” and projects• Data federations and networks• Grant programs
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)
Realizing the LHS (by Going Far and Fast, Together)Creating and seizing opportunities to make sustainable and synergistic impacts…
Emergent…
Our Collective Challenge…
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.
“Let’s All Work Together to Give the Gift of Health…”