national learning health system landscape
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National Learning Health System Landscape
Joshua C. Rubin, JD, MBA, MPH, [email protected]
@JoshCRubinTuesday, October 27, 2015
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
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
Preliminary Acknowledgement
Some portions of this presentation were adapted from the work of my colleague and boss, Dr. Charles P. Friedman.
Welcome (Back) to the Future…
Sir Joe Kanter…
Envisioning the Future: 2015
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
Health IT and Politics…
• “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)
Movies?
The Learning Health System (LHS):Shared Common Purpose
Disruptively Transforming Health…
• Every Health Experience…• Every Decision Affecting Health…• Every Person…
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
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.”
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…
“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.”
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)
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.”
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.
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.
The LHS Platform
Mechanisms for managing
communities of interest
Learning from Every Experience of Every (Consenting) Patient…
• Technology• Policy (Including Governance and Incentives)• Process• People• Culture
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
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
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…
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 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
“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
#DataSavesLives (UK)
The LHS Vision Going Global…
“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)
“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
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.
“… 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