learning health system · creating a learning health environment ... happen –lean learning loop...
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Learning Health SystemW. Ed Hammond. Ph.D., FACMI, FAIMBE, FIMIA, FHL7, FIAHSI
Director, Duke Center for Health Informatics, CTSI
Director, MMCi Program
Duke University
Defining Learning
• The act or experience of one that learns
• Knowledge or skill acquired by instruction or study
• Modification of a behavior tendency by experience
• Every experience or event provides an opportunity for
learning.
• Learning is an individual experience.
• Awareness of what we are doing and the outcome is
important
The Learning Process
• “A process that leads to change, which occurs as a result
of experience and increases the potential of improved
performance and future learning.” Susan Ambrose
• “Learning involves strengthening correct responses and
weakening incorrect responses. Learning involves adding
new information to your memory. Learning involves
making sense of the presented material by attending to
relevant information, mentally reorganizing it, and
connecting it with what you already know.” Ruth Clark
The Learning Process
• “A persisting change in human performance or performance
potential…[which] must come about as a result of the learner’s
experience and interaction with the world.”
“Learning is a process that occurs within nebulous environments
of shifting core elements – not entirely under the control of the
individual. Learning (defined as actionable knowledge) can reside
outside of ourselves (within an organization or a database), is
focused on connecting specialized information sets, and the
connections that enable us to learn more are more important than
our current state of knowing.”
We can’t solve today’s
problems with the
same level of thinking
that created them.
Albert Einstein
Key Questions
• What are the boundaries for Learning Health?
• How do we make Learning Health a group effort?
• How do we operationalize Learning Health?
• Is Learning Health proactive or reactive?
• How important is recognizing change to Learning Health?
• What does Learning Health not encompass?
• Is Learning Health different than any other initiative?
Key Questions (cont.)
• If you only write a paper about it, how does it count as
Learning Health?
• Are we ready for Learning Health …
– Technology
– Policy
– Regulation
– Clinical acceptance
– Reimbursement
To Err Is Human?
• Much of today’s healthcare systems depend on human
memory, usually in chaotic situations.
• Without an organized way of doing things, we are more
likely to introduce errors.
• Can Learning Health provide an organizational structure
and an environment that reduces reliance on pure
memory to do the right things?
• Learning Health systems can reduce the failure of care.
Creating a Learning Health Environment
• Quality Improvement Theory – Dr. Brent James
– Select a high priority clinical process
– Ues Evidence-based Best Practice Guidelines
– Blend it into clinical workflow
– Introduce Standard Work which defines what is supposed to
happen
– Lean Learning Loop – provides feedback and generalizes new
knowledge for the next cycle
Learning Health Units: Transforming Health in One DukePatients
CliniciansResearchersCommunity
Artificial IntelligenceStatistics
Rapid AnalyticsEmbedded Trials
PracticeProcess
PaymentPolicy
InformaticsCurationInfrastructureHealth Technology
Implementation& Evaluation
Research
LHU
Engagement
Data Liquidity
DUKE UNIVERSITY
DUKEHEALTH
LEARNING HEALTH
Source: Dr. Genie Hinz
Applying Learning Health
• Current Measles epidemic – vaccinations
• Patient matching
• Readmission
• Opioid epidemic
• More effective organ harvesting
• Adequate and consistent clinical language
• Use Health IT to support better clinical care
Categories of Solutions Patients
CliniciansMedication Availability
Synopsis views of temporal 17-P treatment (Individual) Prematurity Risk Registry and Dashboard (Population cohort -> Secondary support for research)
Reporting tools for patients identified for treatment
Incorporation of HIT tools into clinical Practice
Population Management Resources to track patientsunder 17-P treatment
Discrete Data needs- Identify at risk patients- Capture of weekly 17-P dose at various
locations - OB – Big 11 lab captureSpecific Prematurity Risk Documentation
Implementation& Evaluation
Data Visualization
Engagement
Data Liquidity
Source: Dr. Genie Hinz
Opportunities
• Every patient encounter provides an opportunity to learn
how to improve the healthcare system.
• Patients must be included in Learning Health.
• Trust and transparency are necessary components for
Learning Health.
• Learning Health supports consistency.
The Journey to the Realization of Learning Health Systems on a
Regional and Global BasisDiscussion at the 15th Academic Medical Center Conference on Privacy & Security
Holt Anderson, FHIMSS
NCHICA Board of Directors
Learning Health Community Board of Directors
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June 3, 2019The Washington Duke Hotel & Conference Center
Durham, NC
Objectives:
•Provide an overview of strategies and activities for realizing the concept of Learning Health Systems
•Potential Benefits, Operational Challenges & Value/Business Cases
•Conference attendee’s feedback and perspectives of how the vision can be achieved and key elements for success in your organization (champions?)
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Potential Issues for Privacy and Security Officials Include:
• Enabling Domestic and International and Data Exchange
• Exchange Standards and Policies Including eHealth Exchange DURSA, HIPAA, & GDPR
• Emergence of Precision Health and Use of DNA
• Data Aggregation and Analysis for Clinical and Research Purposes, Including AI
• Responding to Internal Champion(s)
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The Learning Health Journey
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• 1999 To Err is Human• “Building a Safer Health System”
• 2001 Crossing the Quality Chasm• “…a new health system for 21st Century”
• 2007 The Learning Healthcare System • “IOM Roundtable on Evidence-based Medicine”
• 2011 The Learning Health System – IOM Update Report
• “…and its Innovation Collaboratives”
• 2012 1st Learning Health Community (LHC) Summit• Outcome: Published “The Core Values Underlying a National-Scale, Person-Centered Continuous
Learning Health System (LHS)”
• 2015 Interoperability Roadmap – Published by ONC• “Connecting Health and Care for the Nation” – Goal of Achieving LHS capabilities by 2024
• 2017 2nd LHC Summit• “Transforming the future of health together; The Learning Health Systems Consensus Action Plan”
• 2018 LHC Organized as 501(c)(3) nonprofit
• Established following IOM Articulation of the Learning Health Concept
• 1st Summit in DC in 2012• Developed “Core Values for LHSs”
• 2nd Summit in 2016• Developed Action Plan
• Incorporated as 501(c)(3) nonprofit in 2018
• Currently Developing a LHS Maturity Model Concept
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The Core Values Underlying Person-Centered, Continuous-Learning Health Systems (LHSs)
1. Person-Focused
2. Privacy
3. Inclusiveness
4. Transparency
5. Accessibility
6. Adaptability
7. Governance
8. Cooperative and Participatory Leadership
9. Scientific Integrity
10.Value
DRAFT FOR DISCUSSION PURPOSES 20
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http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)2379-6146
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FAMILY & SUPPORT SYSTEM
INDIVIDUALS
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Stakeholders who INDIRECTLY Interact with Individuals
RESEARCHERS
SOFTWARE & SERVICES
ACCREDITING ENTITIESACCREDITING ENTITIES
REGISTRIES
MEDICAL DEVICE SUPPLIERS
WELLNESS DEVICE SUPPLIERS
GOVERNMENTREGULATORS
PUBLIC HEALTH ENTITIES
PHARMA
HIEs
LEARNING HEALTH SYSTEMs (LHSs)
Virtuous cycle of continuous study, learning, and improvement
DataAnalysisInterpretationFeedbackChange
Emerging VISION of an Operational LHS Environment
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FAMILY & SUPPORT SYSTEM
Millions of Individual
Profiles
SOCIO-ECONOMIC FACTORS
BEHAVORIAL HEALTH RECORDS
CARE ENCOUNTER RECORDS
Direct Interactions
In-person at: Hospital,
Office, Clinic,Retail Store,
Home
Acute CarePost Acute CareLong-Term Care
Remote by:
Stakeholders who DIRECTLY Interact with Individuals
PROVIDERS & PUBLIC HEALTH
PAYERSGovernment &
Private
LABS
PHARMACIES
EMPLOYERS
PATIENT ADVOCATES
SUPPORT GROUPS
Stakeholders who INDIRECTLY Interact with Individuals
RESEARCHERS
SOFTWARE & SERVICES
ACCREDITING ENTITIES
ACCREDITING ENTITIES
REGISTRIES
MEDICAL DEVICE SUPPLIERS
WELLNESS DEVICE SUPPLIERS
GOVERNMENTREGULATORS
PUBLIC HEALTH ENTITIES
PHARMA
HIEs
PERSONAL HEALTH RECORDS
COMPREHENSIVE DATA: Symptoms, Diagnosis, Genetics, Treatments,
Outcomes, Side Effects, Environmental Factors, etc.
AUTHORIZED SHARING
P
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INDIVIDUALS
Initiatives Leading to an LHS Capability Include:
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LHSs - “Network of networks that connects islands of expertise”
NC Precision Health Collaborative
27https://www.ncbiotech.org/transforming-life-science/sectors-of-attention/precision-health
Realizing LHSs:Continuing the Journey
•Begin within Integrated Delivery Systems (e.g. K-P)
•Move to Community-Based HIEs
•Expand to Statewide Exchange (i.e. Learning Health for Michigan)
•Adopt Country-wide (e.g. Switzerland, Taiwan, UK)
•Global
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Imagine• If you or a close family member has a serious medical condition,
has been tested, and has a diagnosis.
• If your clinical professional has your “clinical profile” including your DNA, Family Health History, Problem List, Meds, Allergies, Socio-Economic Factors, etc.
• If your clinical professional is able to find matches for your clinical profile who have the same diagnosis including information on their treatments, outcomes, and side effects, and
• Now your clinical professional presents to you a recommendation for the 3 best treatment alternatives each with a different side effect
• And it is your choice on the side effect you can tolerate the best.
• Finally, your profile, treatment, outcome, and any side effect is shared to continually improve the Learning Health System!
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• Building Trust with Individuals and Among Competing Organizations
• Adoption of Legal and Policy Standards to Enable Data Exchange on a Broad Scale (even Internationally)
• Fostering Leadership Among Health and Healthcare Professionals
• Developing Positive Value Propositions for Direct and Indirect Stakeholders
• Incorporating Transition from FFS to Value-based / Outcomes-based Care
• Achieving Compatible Data Standards and Technology Interoperability
• Managing Expectations of the Availability of LHS Capabilities30
INFLUENCING FACTORS & CHALLENGES INCLUDE:
Doctors risk malpractice when not using machine learning for diagnosis and treatment planning.
• “A group of Chinese and American researchers recently created an AI system that diagnoses common childhood illnesses, ranging from the flu to meningitis. Trained on electronic health records compiled from 1.3 million outpatient visits, of almost 600,000 patients, the AI program produced diagnosis outcomes with unprecedented accuracy.”
• …
• “With an eye to the future, [Neil] Jacobstein has predicted that ‘we will soon see an inflection point where doctors will feel it’s a risk to not use machine learning and AI in their everyday practices because they don’t want to be called out for missing an important diagnostic signal’.”
CHARACTERISTIC TODAY - 2019VISION - 2024 or
Before
Access to Healthcare Limited Universal
Diagnosis / Treatment / Outcome
Based on Provider’s Experience & Personal Network
Based on Global Information about Similar Individuals
Mind and Body Mental and Physical Health are Separate Individual as a Single Whole
Health OwnershipSome Individual’s Take Ownership, but
Most Do NotCompletely on the Individual
Health RecordsSome Paper
Some ElectronicAll Electronic
Interoperability Limited Universal
Records Accessibility Limited As Needed
Data Security Questionable Secure
Collaboration Seemingly Forced Genuine
Legal and Policy BarriersEach Country and Each State has
Different LawsSimilar laws across borders
Intellectual Property Fears of Repercussion Innovative and Incentivizing
GAPS to Overcome
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Your Contributions ???
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• Enabling and Informing Policy Decisions• Privacy, Finance, Management, etc.
• Supporting Clinical Drivers• Direct Health and Care Providers• Public Health
• Informing Technical Implementations• Informatics & Analytics• Systems Design
• Encouraging Policy Makers and Entrepreneurs• Other ???
Discussion
Reactions & Recommendations ?
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