Presentación del Dr. Peter Embi, Presidente y CEO del Regenstrief Institute, en el marco del Primer Simposio Salud: Nuevas Tecnologías, Avances y Desafíos, realizado en Santiago de Chile los días 18 y 19 de julio, 2017

1. Leveraging Informatics to Create
a Learning Health System
Peter J. Embi, MD, MS, FACP, FACMI
President and CEO, Regenstrief Institute
Sam Regenstrief Professor of Medicine
Associate Dean for Informatics and Health Services Research
Vice-President for Learning Health Systems, IU Health
July 19, 2017
Santiago, Chile

2. Applying and Generating
Evidence
• Goal of Health Informatics and Health IT
• To improve human health
• Healthcare, population health, and research
• Focus of clinicians, hospitals, clinics, payors
• “Research” = our evidence base
• Aspects of “research” at the “point-of-care”
• Two main aspects to this:
• 1. Delivering knowledge to point-of-care
• 2. To practice EBM, must generate evidence
• Multiple initiatives in USA focused on this…
• Precision Medicine, Cancer “moonshot”,
Patient-centered outcomes research
initiatives (PCORI), etc.

4. Data relevant to health
• Data relevant to health largely beyond traditionally
collected healthcare data

5. Source: What Makes Us Healthy versus What We
Spend on Being Healthy. Bipartisan Policy Center.
(2017, April 20). Retrieved from
https://bipartisanpolicy.org/library/what-makes-
us-healthy-vs-what-we-spend-on-being-healthy/

6. Exposome Inforamtics
• Environment’s contribution to health has been
conceptualized as the exposome.
• Determinant potential of physio-pathological
processes rising as data increasingly available
• The growth of miniaturized sensing devices
• Accessible, affordable, expanding
• Biomedical informatics must provide a coherent
framework for dealing with multi-scale
population data including:
• Phenome, Genome, Exposome, and their
interconnections.
From: MICHAEL WARAKSA:
MAPPING THE EXPOSOME

7. Exposome informatics: considerations for the design of future biomedical research
information systems (Sanchez FM, et al. JAMIA. 2014.)

8. Exposome informatics: considerations for the design of future
biomedical research information systems
(Sanchez FM, et al. JAMIA. 2014.)

9. Framing data sources by dimensions of “bigness”
(Weber G, et al.
JAMA 2014)

10. From: An informatics research agenda to support precision medicine: seven key areas
J Am Med Inform Assoc. 2016;23(4):791-795. doi:10.1093/jamia/ocv213

11. Challenges to a “Learning Health System”
• Leveraging existing data for research and Quality–opportunities
• Clinical phenotype and outcomes
• Administrative and fiscal variables
• Bio-molecular markers
• Patient-reported variables
• Data often collected, stored for clinical care, administrative, not research
purposes
• Data often incomplete, unreliable
• Key data often stored narratively, not discretely
• Data often difficult to access
• Research often requires integration across sites
• Informatics efforts address some of these…

12. Efforts to address challenges – Learn as we go
 Initiatives aim to leverage digital clinical data for research and
improvement
 EHR implementation and meaningful use
 Data Warehousing Efforts
 Registries and Data Networks
 Health Information Exchanges
 Outcomes and CER initiatives
 Many engaging practitioners and leverage EHRs, data for research
 Progress being made, but remains very challenging
• Many, not all challenges are “technical”
• Many socio-organizational, regulatory, cultural
• Make leveraging existing systems for research difficult
• Embedding “learning” into systems/workflow, a major challenge

13. The Current Research-Practice Paradigm
and a Learning Health System
• Challenge and opportunities today
• Informed by EBM:
• Clinical care and research are distinct activities
• Activities overlap mainly at application of evidence
• Information flow/influence is unidirectional
• Research influences Practice (e.g. EBM)
• We know this is no longer the case, but
• Persistence of this paradigm impedes progress
Research EBM

14. Traditional path from generation of
evidence to its application
Haynes, B. et al. BMJ 1998;317:273-276

15. Research-Practice Paradigm – EBM+EGM
• Clinical care activities not entirely distinct
from research activities
• Must consider EGM when we practice to
advance science and care
• Many EGM activities ongoing and need
support to achieve goals
• Advancing EGM is critical to completing
the EBM lifecycle
• Multiples enabling factors and
stakeholders key to making this reality
Embi PJ and Payne PR. Medical Care. Aug 2013

16. National Health IT for a Learning Health System
“A nationwide network. Meaningful use of EHRs, widespread participation by multiple
diverse entities, and an appropriate technical architecture can spur the construction of
a highly participatory rapid learning system that stretches from coast to coast.”
Friedman CP et al. Sci Transl Med 2010

18. Learning Systems…
Smoyer, Embi, Moffat-Bruce. JAMA 2016

19. Local
Learning
Health
System
Informatics
& Health IT
People &
Cultural
Issues
Fiscal &
Incentives
Systems &
Workflow
issues
Local
Learning
Health
System
Local
Learning
Health
System
Local
Learning
Health
System
Realizing Evidence Generating Medicine
to Enable the Learning Health System

20. Scholarly and Operational Emphasis Areas
1) Studying linkages between molecules
and populations
2) Developing tools and methods to
enable “evidence generating
medicine” paradigm
3) Building bridges to the health system
4) Implementing and studying solutions
in the healthcare delivery
environment and working with IT in
order to do so
Embi, Peter J., Payne, Philip R.O. "Evidence generating medicine: redefining
the research-practice relationship to complete the evidence cycle." Medical
care 51 (2013): S87-S91.

21. Virtuous Cycle of Evidence Generation and Application
Embi, Peter J., Payne, Philip R.O. "Evidence generating medicine: redefining
the research-practice relationship to complete the evidence cycle." Medical
care 51 (2013): S87-S91.

22. Realizing EGM/LHS:
Informatics can help enable
• There are challenges to overcome
• Tools for advancing point-of-care EGM limited
• Work with EHRs to develop better approaches
• Data quality often inadequate
• Work with practitioners, patients and systems
• Systems and regulations often developed and implemented with
little-no concern for research implications
• Informaticians, clinicians, researchers need to be involved in design/implementation
• Socio-organizational…

23. Advancing EGM:
Socio-organizational issues & EGM
• Information issues only part of the solution
• Must consider issues at several levels
• Policy level
• Systems level
• Individual level
• By valuing EGM as part of
Evidence cycle, we can begin
to assure proper alignment
of goals and systems
Policy: Local, Regulatory, Payment
Alignment
Systems: Hospitals, Practices,
Vendors
Individual/Community: Public,
Patients, Physicians, Nurses

24. Leverage Informatics to Create a Learning Health System
• As Informaticians, we must support
EGM
• Need to study how to enable EGM
• Design and develop
systems/approaches that facilitate
practice and learning
• Train informatics/healthcare workforce
to do this routinely
• Create a virtuous cycle of activities to
advance healthcare, quality and
research – powered by Informatics…
Embi, Peter J., Payne, Philip R.O. "Evidence generating medicine: redefining
the research-practice relationship to complete the evidence cycle." Medical
care 51 (2013): S87-S91.

25. Muchas Gracias!
Peter J. Embi, MD, MS
pembi@regenstrief.org
@embimd