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Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
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: multifocal, 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]
Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
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 protocolsUltra-large-scale system perspective Functionality focus System specifications/interoperability Workflow and usability Security and privacy safeguards System innovationONC 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 insightsShared 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 innovationNIH, 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
Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
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-partnershipValue proposition and patient confidence Shared learning culture Patient–clinician outcome partnerships Person-centric, lay-oriented health information Closing the disparity gap Continuous evaluationAHRQ, 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 capacityThe vision Guiding principles Participant roles and responsibilities Process and protocol stewardship Implementation phasing Continuous evaluationONC 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

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

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

Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
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Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
Page 252
Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
Page 253
Suggested Citation: "Appendix A: The Learning Health System and the Digital Health Utility." Institute of Medicine. 2011. Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary. Washington, DC: The National Academies Press. doi: 10.17226/12912.
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Next Chapter: Appendix B: Case Studies for the Digital Health Infrastructure
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