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Institute of Medicine (US); Grossmann C, Powers B, McGinnis JM, editors. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington (DC): National Academies Press (US); 2011.

Cover of Digital Infrastructure for the Learning Health System

Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary.

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AThe Learning Health System and the Digital Health Utility

Foundational Elements

Learning Health System Characteristics
Data utility: data stewarded and used for the common goodDigital technology: the engine for continuous improvementTrust fabric: strong, protected, and actively nurturedLeadership: multi-focal, networked, and dynamic
Care: starting with the best practice, every timeHealth information: a reliable, secure, and reusable resourceOutcomes and costs: transparent and constantly assessedKnowledge: ongoing, seamless product of services and research
Culture: participatory, team-based, transparent, improvingDesign and processes: patient-anchored and testedPatients and public: fully and actively engagedDecisions: informed, facilitated, shared, and coordinated
Meaningful Use Requirementsa
Core structured personal data (age, sex, ethnicity)Core list of active problemsCore structured clinical data (VS, meds, [labs])Clinical decision supportCare coordination support/interoperability
Outpatient medicines electronically prescribedAutomated medication safeguard/econciliationVisit-specific information to patientsAutomated patient reminderse-Record patient access (copy or patient portal)
Embedded clinical quality measuresSecurity safeguards[Condition-specific data retrieval capacity][Public health reporting (reportable conditions)][Advance directives for ages >65]

Optional elements denoted with [ ]. See Appendix B for details.

Next-Generation Digital Infrastructure

LHS Digital Health Utility Next generation requirementsStrategy Elements Activities that advance:Stakeholder Responsibilitiesb
Technical ProgressUltra-large-scale system perspective
Distributed, local data maintenance
Virtual interoperability
Reliable use and system security protocols
Standards vehicles for setting/revising, metadata, vocabulary, data transport, common core datasets, sentinel indicators, access authorization/authentication, data quality review protocols
Ultra-large-scale system perspective
Functionality focus
System specifications/interoperability
Workflow and usability
Security and privacy safeguards
System innovation
ONC works with NIST, other agencies and IT community to advance interoperability and security protocols
NSF works with ONC/NIH on test beds for digital infrastructure component technologies including ULS system approach
Interoperability agreements among delivery systems utilizing EHRs
CMS develops test beds for digital infrastructure application in care coordination/delivery model innovation
Knowledge Generation/UseCore clinical data elements available for quality improvement and research
Channels and protocols for integrating clinical and public health data
Capacity and protocols for query- driven data use in quality and research and monitoring of sentinel indicators
Novel statistical and database tools for reliable new insights
Shared learning environment
Point of decision support and guidance
Research-ready records for data reuse
Patient-generated data
Integration/use of data across sources
Distributed data repositories
Sentinel indicators
Query capacity
Analytical tools and methods innovation
NIH, NSF, AHRQ, and FDA work on innovative approaches to research insights from clinical data
CDC develops templates/protocols for integrating population and clinical data
Healthcare organizations form research collaboratives
Patient/Population Engagement“New norm” for patient involvement
Facilitated personal record interface
Clinician–patient electronic partnership
Patient information access/control
Updated best practices delivered at point of decision
Active patient support for data use in care improvement
Clinician–public health e-partnership
Value proposition and patient confidence
Shared learning culture
Patient–clinician outcome partnerships
Person-centric, lay-oriented health information
Closing the disparity gap
Continuous evaluation
AHRQ, FDA, NIH, and ONC use established links with patient community to foster active embracing of the digital health utility
Patient and clinician groups mediate public engagement and facilitate dialogue among stakeholders to develop shared learning culture/trust
GovernanceProgressively evolving requirements, specifications, process protocols for exchange, interoperability, and research
Cross-national harmonization to foster the global e-health utility
Broad ongoing evaluation capacity
The vision
Guiding principles
Participant roles and responsibilities
Process and protocol stewardship
Implementation phasing
Continuous evaluation
ONC works with other agencies, the HIT community, and patient/clinician groups to foster development of a governance mechanism that encourages dynamic entrepreneurial growth while safeguarding personal security and the common good

Sample list, neither definitive nor complete. See page xxiii for list of acronyms.

Copyright © 2011, National Academy of Sciences.
Bookshelf ID: NBK83564


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