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Informatics for the Nationwide Learning Health System Charles P. Friedman Professor of Information and Public Health University of Michigan University.

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Presentation on theme: "Informatics for the Nationwide Learning Health System Charles P. Friedman Professor of Information and Public Health University of Michigan University."— Presentation transcript:

1 Informatics for the Nationwide Learning Health System Charles P. Friedman Professor of Information and Public Health University of Michigan University of Utah January 27, 2014

2 Preamble I believe that people are drawn to ideas that reflect imagination and vision. Up until recently, the field of health IT has lacked such an idea, one that would unite all the stakeholders and attract the brightest minds from a range of disciplines. By the end of this hour, I hope to convince you that the Learning Health System is that key idea. 2

3 Today’s Menu Primi The plight of nation’s health system (briefly) The vision of a nationwide Learning Health System (LHS) Widespread calls for the LHS and early progress toward a “first system” Secondi Features of a high-functioning and sustainable system The perspective needed to achieve it 3

4 The Plight in a Figure 4 Expenditure Per Capita

5 The Plight in Words Spending 18% of GDP on health, which is unsustainable –25% of which is “wasted” 45 th in infant mortality. Japan and Sweden have a rate 40% of ours. New estimate: 200,000 to 400,000 die each year in hospitals due to medical errors Among five highly developed nations, the U.S. is last or next-to-last on five indicators of a “high functioning” health system 5

6 6 Slide courtesy of Kenneth Mandl And We’re Virtually Blind: We Can’t Monitor the System in Real Time

7 We Need a Hefty Rudder, Now… 7

8 Today’s Menu Primi The plight of nation’s health system (briefly) The vision of a nationwide Learning Health System (LHS) Widespread calls for the LHS and early progress toward a “first system” Secondi Features of a high-functioning and sustainable system The perspective needed to achieve it 8

9 9 9 The Rudder: A National-Scale Learning Health System (LHS) Pharma Beacon Community Integrated Delivery System Patient- centered Groups Health Information Organization Health Center Network Federal Agencies State Public Health Governance Patient Engagement Trust Analysis Dissemination

10 The LHS Enables “Virtuous Cycles” of Study, Learning and Improvement 10 Assemble Change Interpret Analyze Feedback

11 Example: Reducing Falls in Nursing Homes 11 Assemble Data: How do we prevent falls? What is the fall rate? Change Current Practice: In whole or part… Interpret findings: Are the results credible? What advice should be given? Analyze Data What practices associate with lower fall rates? Feedback: Based on your current practice, you might want to consider… Decision to study falls Assemble Data: How do we prevent falls? What is the fall rate?

12 LHS: A Platform that Supports Multiple “Virtuous Cycles” 12

13 A High Functioning LHS Will Make These (and Other) Things Possible “17 years to 17 months, or maybe 17 weeks or even 17 hours…“ Over time, the best “personalized” dosage of a new drug is learned based on patient experience. The current optimal dosage algorithm is automatically implemented nationwide in EHR systems. During an epidemic, new cases are reported directly from EHRs and the spread of the disease is predicted. Clinicians are alerted as the epidemic approaches their practice areas. A patient facing a difficult medical decision describes her case. She discovers the experiences of other patients like her. 13

14 14 The Rudder’s Raw Material: Our Health System Goes Digital Source: National Center for Health Statistics, Centers for Disease Control, NAMC (National Ambulatory Medical Care) Survey

15 The LHS: One Infrastructure that Supports 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 15

16 The LHS as Currently Envisioned A federation –Not a centralized database Grounded in public trust and patient engagement Participatory governance An “Ultra Large Scale” System –“Just enough” standardization –Supports innovation around standards 16

17 The LHS as a Fractal 17 At every level of scale, it looks pretty much the same Local, regional, national, global A system of like sub-systems 17

18 Today’s Menu Primi The plight of nation’s health system (briefly) The vision of a nationwide Learning Health System (LHS) Widespread calls for the LHS and early progress toward a “first system” Secondi Features of a high-functioning and sustainable system The perspective needed to achieve it 18

19 Institute of Medicine Reports Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care 19 Best Care at Lower Cost: The Path to Continuously Learning Health Care in America

20 Perspective: Jan 3, 2013 “Code Red and Blue — Safely Limiting Health Care’s GDP Footprint” Arnold Milstein, M.D., M.P.H. …U.S. health care needs to adopt new work methods, outlined in the Institute of Medicine’s vision for a learning health system… Such methods would enable clinicians and health care managers to more rapidly improve value by continuously examining current clinical workflows, management tools from other service industries, burgeoning databases, and advances in applied sciences (especially health psychology and information, communication, and materials technologies). They could then use the insights gained to design and test innovations for better fulfilling patients’ health goals with less spending and rapidly scaling successful innovations. 20

21 The 2011 Federal Health IT Strategic Plan Better Technology Better Information Transform Health Care Goal V: Achieve Rapid Learning and Technological Advancement Goal IV: Empower Individuals with Health IT to Improve their Health and the Health Care System Goal III: Inspire Confidence and Trust in Health IT Goal II: Improve Care, Improve Population Health, and Reduce Health Care Costs through the Use of Health IT Goal I: Achieve Adoption and Information Exchange through Meaningful Use of Health IT 21

22 Progress: Learning “Islands” Organizations that have become Learning Health Systems at their level of scale. But don’t routinely connect with other islands. 22

23 Progress: Inter-organizational Data Federations and Networks 23

24 Progress: Grant Programs NIH “Big Data to Knowledge” PCORI Research Networks NSF Smart and Connected Health 24

25 Progress: Grassroots Movement National “Summit” convened in May 2012 to envision LHS as set of shared beliefs A Dumbarton Oaks conference for the LHS ~ 70 organizations represented at the National Press Club Resulted in 10 consensus Core Values 56 organizations have formally endorsed Giving rise to a Learning Health Community 25

26 26

27 Approaching a “First” National System 1.Words: calls and reports 2.“Learning Islands” 3.Data federations and networks 4.Grant programs 5.A grassroots coalition of the willing But this “first” system will not turn the Titanic. We need to set our sights on a higher-functioning system. 27

28 Today’s Menu Primi The plight of nation’s health system (briefly) The vision of a nationwide Learning Health System (LHS) Widespread calls for the LHS and early progress toward a “first system” Secondi Features of a high-functioning and sustainable system The perspective needed to achieve it 28

29 LHS Research Challenges Workshop: April 2013 A national workshop to explore the research challenges inherent in achieving a high functioning LHS Computer science to epidemiology to economics 45 invited participants plus Federal liaisons Report (“Toward a Science of Learning Systems”) at healthinformatics.umich.edu/lhs/nsfworkshophealthinformatics.umich.edu/lhs/nsfworkshop 29

30 A High-Functioning LHS Would meet four system-level requirements: 1.Trusted and Valued by All Stakeholders 2.Economically Sustainable and Self- Governing 3.Stable, Rapidly-Functioning, Certifiable, Adaptable, and Self- Improving 4.Capable of Engendering a Virtuous Cycle of Health Improvement 30

31 Workshop Findings at Two Levels 1.What we were asked to do: the research questions that must be addressed to meet LHS system level requirements – 106 questions organized into four categories and 19 sub-categories 2.Something transcendent: A vision of a science of learning systems necessary to address these questions (and achieve the LHS) 31

32 Sample Questions (2/106) An LHS that is Trusted and Valued by All All Stakeholders – What properties of heterogeneous, routinely collected clinical data, including methods in place to manage and curate them, will engender confidence and trust in the knowledge generated by the LHS? An LHS that is Economically Sustainable and Self-Governing – What ingredients essential to standing up and sustaining the LHS have no private rationale for funding or are unlikely to be funded privately, and therefore should be considered for catalysis stemming from public funding? 32

33 Sample Questions (2/106) An LHS that is Stable, Rapidly- Functioning, Certifiable, Adaptable, and Self-Improving – How do we make data sufficiently self- describing so that, for example, the system might be able to identify, without human intervention, data that are most relevant to addressing a question? An LHS that is Capable of Engendering a Virtuous Cycle of Health Improvement – How do we build an LHS that is smart enough to explain its own inferences: how it learns, what it learns, and what it has already learned? 33

34 Today’s Menu Primi The plight of nation’s health system (briefly) The vision of a nationwide Learning Health System (LHS) Widespread calls for the LHS and early progress toward a “first system” Secondi Features of a high-functioning and sustainable system The perspective needed to achieve it 34

35 Workshop Findings at Two Levels 1.What we were asked to do: the research questions that must be addressed to meet LHS system level requirements – 106 questions organized into four categories and 19 sub-categories 2.Something transcendent: A vision of a science of learning systems necessary to address these questions (and achieve the LHS). 35

36 The LHS Can’t be Framed Purely as a Technical Problem 36 = (Advice for Utah and the nation.)

37 History Lesson: the Panama Canal 37 They tried to build the Panama Canal the same way, and failed. They didn’t have the right perspective on the problem. The French built the Suez Canal as a ditch in the desert.

38 The Socio-Technical Approach that Built the Panama Canal 38

39 The Transcendent Workshop Product The right perspective for the LHS challenge The LHS makes the irrefutable case for a science of cyber-social ecosystems that will be a science of learning systems closely aligned with informatics Fundamental principles to enable the effective design, analysis, construction, governance, operation and evolution of ultra-large systems such as the LHS 39

40 Key Precepts of Cyber-Social Ecosystems Complex learning processes are effected by networks of people, institutions, and digital computing machines. These networks self-organize and evolve. The system components are loosely coupled and generally operate in their own self-interest The system as a whole, not just the digital infrastructure, but also networks of people and institutions, will have to be understood as parts of an information processing ecosystem. 40

41 This Framing is Mission Critical The cyber-social ecosystem perspective must drive the achievement of the LHS – Otherwise, we will fail like the French attempt to build the Panama Canal Key implications for Utah and the nation: – Take an evolutionary approach (less is more) – Design for adaptation – Embrace the fractal – Attend to all parts of the virtuous cycle – Attend to all domains (care, empowerment, public health, research) – Engage all stakeholders 41

42 In Sum Our health system is headed directly for the iceberg A high-functioning LHS, a single multi-purpose infrastructure, can turn the “Titanic” A science of cyber-social ecosystems, a science of learning systems, can guide achievement of the high functioning LHS 42

43 And… As the University of Utah becomes a learning entity, it should: Adopt the cyber-social ecosystem perspective to achieve a high-functioning system Engage with the national movement (and not be an island) 43

44 Thanks & Write to Me


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