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Toward Complete & Sustainable
Learning Systems
Charles P. Friedman, PhD
Josiah Macy, Jr. Professor
Chair, Department of Learning Health Sciences
Professor of Information and Public Health
University of Michigan
December 8, 2014
Disclosure
I am the chair of the Interim Steering
Committee of the Learning Health
Community, a grassroots not-for-profit
organization.
2	
  
How I Got Here
•  2009-2011: Encountered the
LHS as ONC’s Chief Science
Officer and engaged with IOM
•  2011-2012: Organized LHS
National Summit, which
spawned a national grass-roots
Community
•  2013: Organized NSF workshop
on LHS research challenges
•  Now: Chair of first academic
department of LHS
3	
  
Main Points
Goal from Lynn’s presentation:
To learn as quickly as possible about the
best medical care for each person—and to
deliver it.
•  This requires support of complete learning
cycles
– Without complete cycles we cannot improve
•  This requires a scalable infrastructure
(platform)
– Without a platform there will be chaos
4	
  
A Health System That Can Learn
•  Every patient’s characteristics and
experience are available for study
•  Best practice knowledge is immediately
available to support decisions
•  Improvement is continuous through ongoing
study
•  This happens routinely, economically and
almost invisibly
•  All of this is part of the culture
5	
  
Complete “Virtuous Cycles” of Study
and Improvement
6	
  
Assemble	
  
Relevant	
  Data	
  
Take	
  Ac6on	
  to	
  
Change	
  Prac6ce	
  
Interpret	
  
Results	
  
Analyze	
  
Data	
  
Deliver	
  Tailored	
  
Message	
  
A	
  Problem	
  of	
  
Interest	
  
Decision	
  to	
  Study	
  
Importance of Complete Cycles
•  Lynn’s expressed goal of delivering
best care after learning what it is
•  Jason report: November, 2014
The learning health system needs to be
“closed loop” to ensure a continuous and
transparent cycle of research, analysis,
development, and adoption of
improvements relevant to health and
wellness and to the delivery of health care.
7	
  
But Instead of Doing This…
8	
  
Assemble	
  
Relevant	
  Data	
  
Take	
  Ac6on	
  to	
  
Change	
  Prac6ce	
  
Interpret	
  
Results	
  
Analyze	
  
Data	
  
Deliver	
  Tailored	
  
Message	
  
A	
  Problem	
  of	
  
Interest	
  
Decision	
  to	
  Study	
  
We Seem to be Doing This
9	
  
Assemble	
  
Relevant	
  Data	
  
Take	
  Ac6on	
  to	
  
Change	
  Prac6ce	
  
Interpret	
  
Results	
  
Analyze	
  
Data	
  
Deliver	
  Tailored	
  
Message	
  
A	
  Problem	
  of	
  
Interest	
  
Decision	
  to	
  Study	
  
Journals?	
  
What I’m Observing
•  Belief that if we get the data and
analytics side right, everything
else will fall into place
–  But we know that’s not true
•  “Big Data to Knowledge”
– And then what?
•  PopMedNet (basis of PCORnet)
does not support the feedback
“red” side of a complete cycle
10	
  
Jeff Brown’s NIH Grand
Rounds: 11/14/14
Use cases, all “open loop”:
• Pragmatic clinical trial design
• Observational studies
• Single study private network
• Pragmatic clinical trial follow up
• Reuse of research data
11	
  
My Pitch…
•  To meet Lynn’s goal, delivery
systems & research networks must
run many complete learning cycles
simultaneously, each addressing a
different problem
•  Also, need an infrastructure that
makes learning effective,
sustainable, and routine--with
economy of scale
•  Enter the platform…
12	
  
How to Learn Routinely: A Single Platform
Supports Multiple Simultaneous “Virtuous
Cycles”
13	
  
Different	
  
Problems	
  
Rapid	
  Cycle	
  
Slower	
  Cycle	
  
PLATFORM	
  
In Other Words…
•  Without a platform, each
learning cycle develops
its own, sub-optimal
methods for learning; no
economy of scale
•  With a platform, all
cycles share & benefit
from a common
infrastructure; costs are
distributed
14	
  
Mechanisms	
  for	
  
capturing	
  
changed	
  prac6ce	
  
Components of the Complete Platform
15	
  
Mechanisms for
communities of interest
to form
Policies governing
access to data
Technology for
aggregating
and analyzing
data
Technology and policy for
making knowledge persistent
and sharable
Mechanisms
for tailoring
messages to
decision
makers
Mechanisms	
  for	
  
capturing	
  
changed	
  prac6ce	
  
Components of the Complete Platform
16	
  
Mechanisms for
communities of interest
to form
Policies governing
access to data
Technology for
aggregating
and analyzing
data
Technology and policy for
making knowledge persistent
and sharable
Mechanisms
for tailoring
messages to
decision
makers
A Platform, Built Right
•  Will scale to embrace genomic data
•  Will have sharable, interchangeable
components: “build once, use many”
•  I urge the genomic community to
demand attention to complete
learning cycles and the “platform”
approach
17	
  
What is My Department Doing?
•  Viewing the LHS as a
research challenge
•  Trying to balance out
current efforts with focus
on the “feedback” side
–  Partnering with PopMedNet
•  Building reusable and
scalable platform
components
•  Would be delighted to
partner with the genomics
community 18	
  
So It’s Up to Us and the Stakes
are High
19	
  
Is	
  it?	
  
Or	
  
And	
  is	
  it?	
  
Or	
  
Thanks & Write to Me
cpfried@umich.edu
LHS.medicine.umich.edu
20	
  

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Toward Complete & Sustainable Learning Systems - Presentation to IOM Genomics

  • 1. Toward Complete & Sustainable Learning Systems Charles P. Friedman, PhD Josiah Macy, Jr. Professor Chair, Department of Learning Health Sciences Professor of Information and Public Health University of Michigan December 8, 2014
  • 2. Disclosure I am the chair of the Interim Steering Committee of the Learning Health Community, a grassroots not-for-profit organization. 2  
  • 3. How I Got Here •  2009-2011: Encountered the LHS as ONC’s Chief Science Officer and engaged with IOM •  2011-2012: Organized LHS National Summit, which spawned a national grass-roots Community •  2013: Organized NSF workshop on LHS research challenges •  Now: Chair of first academic department of LHS 3  
  • 4. Main Points Goal from Lynn’s presentation: To learn as quickly as possible about the best medical care for each person—and to deliver it. •  This requires support of complete learning cycles – Without complete cycles we cannot improve •  This requires a scalable infrastructure (platform) – Without a platform there will be chaos 4  
  • 5. A Health System That Can Learn •  Every patient’s characteristics and experience are available for study •  Best practice knowledge is immediately available to support decisions •  Improvement is continuous through ongoing study •  This happens routinely, economically and almost invisibly •  All of this is part of the culture 5  
  • 6. Complete “Virtuous Cycles” of Study and Improvement 6   Assemble   Relevant  Data   Take  Ac6on  to   Change  Prac6ce   Interpret   Results   Analyze   Data   Deliver  Tailored   Message   A  Problem  of   Interest   Decision  to  Study  
  • 7. Importance of Complete Cycles •  Lynn’s expressed goal of delivering best care after learning what it is •  Jason report: November, 2014 The learning health system needs to be “closed loop” to ensure a continuous and transparent cycle of research, analysis, development, and adoption of improvements relevant to health and wellness and to the delivery of health care. 7  
  • 8. But Instead of Doing This… 8   Assemble   Relevant  Data   Take  Ac6on  to   Change  Prac6ce   Interpret   Results   Analyze   Data   Deliver  Tailored   Message   A  Problem  of   Interest   Decision  to  Study  
  • 9. We Seem to be Doing This 9   Assemble   Relevant  Data   Take  Ac6on  to   Change  Prac6ce   Interpret   Results   Analyze   Data   Deliver  Tailored   Message   A  Problem  of   Interest   Decision  to  Study   Journals?  
  • 10. What I’m Observing •  Belief that if we get the data and analytics side right, everything else will fall into place –  But we know that’s not true •  “Big Data to Knowledge” – And then what? •  PopMedNet (basis of PCORnet) does not support the feedback “red” side of a complete cycle 10  
  • 11. Jeff Brown’s NIH Grand Rounds: 11/14/14 Use cases, all “open loop”: • Pragmatic clinical trial design • Observational studies • Single study private network • Pragmatic clinical trial follow up • Reuse of research data 11  
  • 12. My Pitch… •  To meet Lynn’s goal, delivery systems & research networks must run many complete learning cycles simultaneously, each addressing a different problem •  Also, need an infrastructure that makes learning effective, sustainable, and routine--with economy of scale •  Enter the platform… 12  
  • 13. How to Learn Routinely: A Single Platform Supports Multiple Simultaneous “Virtuous Cycles” 13   Different   Problems   Rapid  Cycle   Slower  Cycle   PLATFORM  
  • 14. In Other Words… •  Without a platform, each learning cycle develops its own, sub-optimal methods for learning; no economy of scale •  With a platform, all cycles share & benefit from a common infrastructure; costs are distributed 14  
  • 15. Mechanisms  for   capturing   changed  prac6ce   Components of the Complete Platform 15   Mechanisms for communities of interest to form Policies governing access to data Technology for aggregating and analyzing data Technology and policy for making knowledge persistent and sharable Mechanisms for tailoring messages to decision makers
  • 16. Mechanisms  for   capturing   changed  prac6ce   Components of the Complete Platform 16   Mechanisms for communities of interest to form Policies governing access to data Technology for aggregating and analyzing data Technology and policy for making knowledge persistent and sharable Mechanisms for tailoring messages to decision makers
  • 17. A Platform, Built Right •  Will scale to embrace genomic data •  Will have sharable, interchangeable components: “build once, use many” •  I urge the genomic community to demand attention to complete learning cycles and the “platform” approach 17  
  • 18. What is My Department Doing? •  Viewing the LHS as a research challenge •  Trying to balance out current efforts with focus on the “feedback” side –  Partnering with PopMedNet •  Building reusable and scalable platform components •  Would be delighted to partner with the genomics community 18  
  • 19. So It’s Up to Us and the Stakes are High 19   Is  it?   Or   And  is  it?   Or  
  • 20. Thanks & Write to Me cpfried@umich.edu LHS.medicine.umich.edu 20