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The Learning Health System: Informing Clinical Decisions by Learning from Every Patient for
Every Patient
Tuesday, August 25, 2015
Joshua C. Rubin, JD, MBA, MPH, [email protected]
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.
Everyone Will Be a Patient/Caregiver!A Visit to the Doctor – What Would You Like to Hear?•Certain, instant, painless, and free•How about recommendations informed by the experiences of:
– Every patient?– Patients like you?
The Learning Health Movement: Better Informing All Decisions Affecting Health by All Stakeholders• Our challenge and our opportunity:
– Too many decisions affecting health today are not informed by the best available knowledge.
– “We” are our most valuable resource. Yet, our fragmented healthcare (non-) system routinely fails to connect and empower individuals, to conserve and learn from our experiences, to share what is known to inform action, to garner the trust to render these undertakings possible, and ultimately to leverage the transformative potential of this invaluable resource.
– The result is a healthcare system that lacks a brain, a heart, and courage. The cost (in dollars and lives) of not learning is unsustainable and unconscionable.
• The Learning Health System (LHS) vision and movement:– The LHS vision promises to transform health by empowering learning from
every patient for every patient (and all other stakeholders). Bigger than big data, the LHS represents a trust fabric and a corresponding culture shift that will revolutionize how data, knowledge, and information flow in health.
– Many pieces are forming; synergistically connecting them into something greater than the sum of their parts takes a multi-stakeholder movement.
– All working together, we can give the gift of health to current and future generations, across our nation and around the world.
Our Challenge and Our Opportunity
Too many decisions affecting health today are not informed by the best available knowledge.
“Participants received 54.9 percent (95 percent confidence interval, 54.3 to 55.5) of recommended care.”
400 Years Behind…
Evidence-Based?
“Anecdotal”
Flying Blind – Failure to Learn at Scale Means We Cannot Even Monitor the System in Real Time
How would learning at scale change this?Ask Dr. Larry Norton…
How Slow?
Our Challenge and Our Opportunity
“We” are our most valuable resource. Yet, our fragmented healthcare (non-) system routinely fails to connect and empower individuals, to conserve and learn from our experiences, to share what is known to inform action, to garner the trust to render these undertakings possible, and ultimately to leverage the transformative potential of this invaluable resource.
The Spirit of Sharing Underpinning the Learning Health System (LHS)
“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.”
A Health Equity Issue?A Civil Rights Issue?
Our Challenge and Our Opportunity
The result is a healthcare system that lacks a brain, a heart, and courage. The cost (in dollars and lives) of not learning is unsustainable and unconscionable.
“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.”
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 Plight in Figures – Global Comparisons…
Why We Need to Learn How to Learn Better…Lessons from a Former Lilly CEO
The old industry model of prescribing drugs for a large patient population with mixed results is due for a change, said Taurel, who served as CEO of Lilly from 1998 until March of this year. Patients are too often disappointed with their treatment, he said, and with good reason. Efficacy rates of medicines prescribed for some of the most common illnesses average around 50 percent.That means some are more effective than 50 percent, but some are far less. Drugs for reducing cholesterol, for instance, work about 80 percent of the time, Taurel said, while many cancer drugs are only 20 percent effective.“There will always be some trial and error in the practice of medicine, but certainly we can do better than 50/50.”
An (Unhealthy) Inconvenient Truth: “The Witching Hour”
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…
Democratizing (and Fueling) the Innovation Engine
“Unsustainable” – We Can’t 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
The LHS Vision and Movement
The LHS vision promises to transform health by empowering learning from every patient for every patient (and all other stakeholders). Bigger than big data, the LHS represents a trust fabric and a corresponding culture shift that will revolutionize how data, knowledge, and information flow in health.
The Big Idea…
“For an idea that does not at first seem insane, there is no hope.”-- Albert Einstein
Alternate Title
Democratizing Health:Building a Grassroots Movement
to Conserve and Intelligently Harness Humankind’s Most Precious Natural Resource –
Human Experience*
*And Why It Matters to an Innovation Company Like Lilly
Joshua C. Rubin, JD, MBA, MPH, [email protected]
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)
Conserving (Real-World) Human Experience and Democratizing Health: A Patient Activist’s Questions…
“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
Sir 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”
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.
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
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
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?
The Cost of Learning is Too HighLearning is Too Inefficient
A Platform – Not Having to Reinvent the Wheel Every Time…
The LHS Platform
Mechanisms for managing
communities of interest
Learning from Every Experience of Every (Consenting) Patient…
• Technology• Policy (Including Governance and Incentives)• People• Culture
“Learning How to Learn”
What About the World Wide Web?
• 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
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
Democratizing (Public) Health: Empowering Millions to Participate…
The LHS Vision and Movement
Many pieces are forming; synergistically connecting them into something greater than the sum of their parts takes a multi-stakeholder movement.
Show Me the Money…
Emergent…
https://www.nitrd.gov/nitrdgroups/images/b/ba/An_Ultra-Large-Scale_Systems_Approach_to_National-Scale_Health_Information_Systems_-p365.pdf
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
LHS Core Values
• Person-Focused• Privacy• Inclusiveness• Transparency• Accessibility• Adaptability• Governance• Cooperative and Participatory Leadership• Scientific Integrity• Value
www.LearningHealth.org
Presentation to Lilly
The Learning Health System and the Learning Health Community: Working Together to Transform
Healthcare and Health
Tuesday, May 20, 2014
Joshua C. Rubin, JD, MBA, MPH, [email protected]
Essential Standards/Structures to Enable Learning (ESTEL) Initiative
LHS Policy and Governance Framework Initiative
Learning Health Community Multi-Stakeholder Initiatives
www.LearningHealth.org
Two Early Endorsers…
86 Endorsements of the LHS Core Values*(As of 8/12/2015)
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
Veterans Health AdministrationOffice of Informatics & Analytics
“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
LHS Fever in Action• Learning enablers• Learning “islands” and projects• Data federations and networks• Grant programs
A Further Testament…
“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.”
A (Disruptive) New Paradigm?
(William Stead, 2015)
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.”
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)
The LHS Vision and Movement
All working together, we can give the gift of health to current and future generations, across our nation and around the world.
“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 all work collaboratively to realize this vision?
• Why is doing so (together) urgent?
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/informatics professional, as a patient/caregiver, as a citizen, and in other roles.
Making a Meaningful Difference: Touching the Lives and Health of Current and Future Generations Across Our Nation and Around the World…
Extra Slides…
Lilly’s Vision, Values, and MissionShouldn’t our health system empower all stakeholders to make significant contributions to humanity by improving health too?
The Learning Health System (LHS)…
97+% of Human (Health) Experience^^^^A Mind is a Terrible Thing to Waste!
A People Powered Health Revolution…
Conserving (and Harnessing) Human Experience (in the Real World) – Then and Now…
This Situation Really is Criminal…
“Learning How to Learn”(and Breaking Down Barriers to Continuous Learning…)
http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison
Democratizing Health by Empowering Millions of People to Participate in “Protecting Health, Saving Lives –Millions at a Time”
A “Chaordic” Revolution?
http://www.epatientdave.com/2012/06/03/information-at-the-point-where-its-needed-can-save-a-life-new-speech/
“Let’s All Work Together to Give the Gift of Health…”