Digital Infrastructure for the Learning Health System The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary (2011) / Chapter Skim
Currently Skimming:
Synopsis and Highlights
Synopsis and Highlights
Pages 1-52
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 1... ...
Progress in computational science, information technology (IT) , and biomedical and health research methods have made it possible to foresee the emergence of a learning health system that enables both the seamless and efficient delivery of best care practices and the real-time generation and application of new knowledge.
|
From page 2... ...
, convened a series of expert meetings to explore strategies for accelerating the development of the digital infrastructure for the learning health system. Presentations and major elements of those discussions are summarized in this publication, Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care.
|
From page 3... ...
to inform and improve clinical care decisions, promote patient education and self-management, design public health strategies, and support research and knowledge development efforts in a timely manner. The Digital Health Infrastructure The digital infrastructure for the learning health system will not solely be the result of features designed and built de novo.
|
From page 4... ...
Regardless of the model, a key rationale for the workshop discussions was the reality that effective and efficient progress in the growth and development of our national and global digital health infrastructure requires active cooperation, collaboration, and role delineation among many organizations, companies, and agencies -- private and public -- at the cutting edge of using health IT to improve health and health care. The striking, and accelerating, progress in the capacity and transformative influences of IT on society over the past three decades is a blended product of interrelated initiatives arising from within the commercial, in
|
From page 5... ...
Through technologies developed by companies such as Google, Microsoft, and Yahoo, the amount of web-based health information accessed daily
|
From page 6... ...
To supplement the relatively limited pre-2009 public investments, independent sector leadership has come from foundations such as the Markle Foundation, the Robert Wood Johnson Foundation, and the California HealthCare Foundation. Furthermore, in addition to the formation of capacity-building resources such as the Health Information Exchanges, a number of facilitative stakeholder groups have emerged -- for example, the eHealth Initiative, the Clinical Data Interchange Standards Consortium (CDISC)
|
From page 7... ...
Since 2009, with the enactment of the Health Information Technology for Economic and Clinical Health Act (HITECH) as part of the American Recovery and Reinvestment Act, the federal government leadership profile has become especially prominent.
|
From page 8... ...
The subsequent stages of meaningful use are currently under development and are presented later in this summary, along with an indication of related issues flagged in workshop discussions. In addition to the meaningful use requirements, ONC has funded a series of grant programs through HITECH, including the Beacon Community grants, aimed at demonstrating community-wide digital infrastructure capacity and use for health improvement, and the Strategic Health Information Technology Advanced Research Projects Program, to foster the capture of technological advances to improve system performance.
|
From page 9... ...
) Outpatient medications electronically prescribed Automated medication safeguard/reconciliation Clinical decision support Care coordination support/interoperability Visit-specific information to patients Automated patient reminders e-Record patient access (copy or patient portal)
|
From page 10... ...
issued its report, Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward (PCAST, 2010)
|
From page 11... ...
It sets out a series of recommendations intended to facilitate private, entrepreneurial initiatives through governmental action to speed development of a "universal exchange language" for health information, the application of which would maximize the ability to use existing and developing electronic record systems. Specifically, it recommends action by the federal government, especially ONC and CMS, in accelerating the identification of standards required for health information exchange using metadata-tagged data elements; mapping various existing semantic taxonomies onto the tagged elements; developing incentives for product use of tagged elements; fostering use of metadata for security and safety protocols;
|
From page 12... ...
About the Digital Infrastructure Meetings It was in this general context of opportunity and challenge that the IOM workshops on the digital health infrastructure were organized. Since the inaugural workshop in 2006, the IOM has conducted 15 workshops in the Learning Health System Series, with 10 reports published and in production: • he Learning Healthcare System T • eadership Commitments to Improve Value in Health Care: Find L ing Common Ground • vidence-Based Medicine and the Changing Nature of Health Care E • edesigning the Clinical Effectiveness Research Paradigm: Innova R tion and Practice-Based Approaches • linical Data as the Basic Staple of Healthcare Learning: Creating C and Protecting a Public Good • ngineering a Learning Healthcare System: A Look at the Future E • earning What Works: Infrastructure Required for Comparative L Effectiveness Research • alue in Health Care: Accounting for Cost, Quality, Safety, Out V comes, and Innovation • he Healthcare Imperative: Lowering Costs and Improving Outcomes T • atients Charting the Course: Citizen Engagement and the Learn P ing Health System This publication considers what has been variously described as the system's nerve center, its circulation system, and the engine to drive the progress envisioned in the Learning Health System Series: the digital infrastructure.
|
From page 13... ...
Aims and Planning A planning committee,1 composed of leading authorities on various aspects of the digital health learning process, shaped the workshop series around the following aims: • F oster a shared understanding of the vision for the digital infra structure for continuous learning and quality-driven health and healthcare programs. • E xplore current capacity, approaches, incentives, and policies; and identify key technological, organizational, policy, and implementa tion priorities for the development of the digital infrastructure.
|
From page 14... ...
To maximize identification and sharing of perspectives, expert presentations were followed by open discussion among participants and separate small group discussion sessions were built into each of the meetings. The first workshop, "Opportunities, Challenges, Priorities," considered the overall vision of the digital infrastructure for the learning health system as well as some of the prominent issues and opportunities related to technical progress, ensuring commitment to population and patient needs, development of the necessary trust fabric, stewardship and governance, and the implications of the global character of the health data trust.
|
From page 15... ...
Discussed approaches to developing this shared learning environment include the direct in volvement and support of patient and population roles in the gen eration of knowledge through the incorporation of user-generated data; understanding the benefits of information use in patient care and population health improvement; and improving patient ac cess to health information to allow for a more active role in care decisions. ngage health and health care, population and patient.
|
From page 16... ...
E mbed services and research in a continuous learning loop. Meet • ing participants often underscored that a digital infrastructure that supports both the generation and use of knowledge cannot be ef fective unless it is integrated seamlessly within the processes from which it draws and is meant to support care delivery, research, quality improvement, and population health monitoring.
|
From page 17... ...
Participants felt that this approach was well suited to the complex adaptive characteristics of the health system, and that it could serve as an anchoring framework for approaching both the social and technical components of the overall infrastructure. E mphasize decentralization and specifications parsimony.
|
From page 18... ...
K eep use barriers low and complexity incremental. Similarly, in • centives for broad participation in the digital infrastructure by all stakeholders was discussed as a crucial factor to its success.
|
From page 19... ...
Dr. Clark concluded by noting that the escalating complexity of medicine demands new kinds of relationships between patients, clinicians, and researchers, and that the digital infrastructure can serve as a platform for this going forward.
|
From page 20... ...
, and that value has concurrently decreased. She stated that increases in the safety, quality, and effectiveness of health care will require investments in a digital infrastructure capable of collecting information across the longitudinal "patient-focused episode," and feeding back performance results along with clinical decision support to patients and clinicians.
|
From page 21... ...
Accordingly, he articulated the need for a more unified vision of a digital infrastructure for population health, including the development of a population health approach to data standards; aggregation and infrastructure; and intelligent, bidirectional messaging for patients and consumers. Technical Issues for the Digital Health Infrastructure IT constitutes the core of the digital learning health system, and technological innovation in several key areas will be crucial in meeting future needs for security, healthcare quality, and clinical and public health applications.
|
From page 22... ...
Interoperability for the Learning Health System Rebecca Kush from the CDISC suggested that one approach to defining interoperability within the digital infrastructure of the learning health system might be the exchange and aggregation of information upon which trustworthy healthcare decisions can be made.
|
From page 23... ...
In this respect, measures were discussed on how the case can be best made on the value proposition for patients in terms that matter to them -- for example, improved outcomes, enhanced efficiency, better satisfaction, more active participation, and greater equity. Electronic Health Data for High-Value Health Care Mark McClellan from the Brookings Institution detailed the essential components of a digital infrastructure that can more closely align quality measurement and improvement in order to achieve high-value health care.
|
From page 24... ...
Based on his experience developing Indivo -- a patient-centered health record that places patients in control of their own health information -- and recent federal incentive initiatives, he predicted a shift in the health information economy from institutional to individual control. This shift will likely change population health research in a way already being seen through forums such as PatientsLikeMe.
|
From page 25... ...
The various dimensions of this issue include building confidence in the security safeguards for clinical data, deepening the appreciation for personal and population health, the fundamental value of sharing data for research purposes to support better care decisions, and economic advantages that result from a well-developed digital health infrastructure and clinical data utility. Demonstrating Value to Secure Trust Edward Shortliffe of the American Medical Informatics Association addressed the need to build a strong fabric of trust among stakeholders by communicating and demonstrating value.
|
From page 26... ...
Ms. McGraw pointed to a comprehensive approach to patient privacy and data security based on the Markle Common Framework for Secure and Private Health Information Exchange.
|
From page 27... ...
security. Stewardship and Governance in the Learning Health System The growth and development of the digital infrastructure for health will be determined in part by the effectiveness of the stewardship and governance instruments designed to facilitate its appropriate structure and function, as well as enlist and channel the engagement and balance of stakeholder interests.
|
From page 28... ...
Guidance for approaches to governing the digital health infrastructure can be gleaned by drawing from examples of similar efforts. Harry Cayton of the National Information Governance Board for Health & Social Care (NIGB)
|
From page 29... ...
Population Health Record Drawing from the assertion that population health is more than the aggregation of individual disease and that therefore, an understanding of population health cannot simply be gleaned by aggregating patient care data, Population and Public Health Information Services' Daniel Friedman advocated for the creation of a U.S. population health record.
|
From page 30... ...
Mr. Liebhold observed that citizens are ready and willing to collect and share their health information and, with the encouragement of industry and employers, to become more actively involved in their own health.
|
From page 31... ...
Informatics and the Future of Infectious Disease Surveillance David Buckeridge, from McGill University, described how HIT is enabling dramatic changes in domestic and international infectious disease surveillance. Detailing how the digital infrastructure can enhance existing systems through the use of automation and decision support, he explained novel approaches to surveillance enabled by recent informatics innovations.
|
From page 32... ...
Introduced to the digital health information conversation by colleagues from the computer science field, hallmarks of a ULS system were described earlier under "Common Themes and Principles" (see Box S-8) , and include its decentralization of data, development, and operational authority to foster local innovation, personalization, and emergent behaviors without requiring consensus from all nodes.
|
From page 33... ...
Participants pointed to a focus on functionalities consistent with ULS systems, and their application to the digital health system, as a potential starting point in advancing the ULS approach. Definition of the ULS principles and characteristics that support learning system functionalities,
|
From page 34... ...
Participants often pointed to a lack of trust as being one of the major impediments to health information exchange. Therefore, attendance to the technical aspects of these issues was emphasized as a crucial part of building trust among stakeholders.
|
From page 35... ...
Consequently, approaches are needed to better marshal reliable clinical information and guidelines in time, form, and content that is seamlessly accessed and used by clinicians and patients. Participants identified a number of needs to be addressed in order for the digital health infrastructure to reach its full potential as a source of real-time clinical research insights.
|
From page 36... ...
Discussions of current and ongoing efforts in the creation of distributed data repositories, such as those being used in FDA's Sentinel Initiative and the HMO Research Network, suggest a promising approach. Coordination between these ongoing efforts, additional support and incentives for their use for clinical research activities, and the support of coordinated intervention-specific patient registries were discussed as potential approaches moving forward.
|
From page 37... ...
Following the theme of "renorming" participation of patients and the population in health improvement, and building on the framework established by previous IOM work in this area, the opportunity for strengthening patient–clinician outcome partnerships through the digital infrastructure
|
From page 38... ...
Governance Discussions of governance strategies for the digital infrastructure for the learning health system focused on facilitating activities to advance some very basic components and principles of the ULS digital health information system. Participants often struggled with the question "what are we proposing to govern?
|
From page 39... ...
Of principal concern is the issue of the vision. As a means of establishing a reference point for progress, workshop participants articulated the need for work to establish a shared vision of the digital health utility for the learning health system.
|
From page 40... ...
In several instances these involved seizing on the opportunities presented by ongoing efforts, and building upon them to include considerations or requirements specific to the learning capacity of the digital infrastructure. Those most frequently mentioned are presented in Box S-10 and described in more detail below.
|
From page 41... ...
41 SYNOPSIS AND HIGHLIGHTS BOX S-10 Priority Action Targets Discussed Stakeholder Engagement The case: Analyses to assess the potential returns on health and economic dimensions Involvement: Initiative on citizens, patients, and clinicians as active learning stakeholders Technical Progress Functionality standards: Consensus on standards for core functionalities -- care, quality, public health, and research Interoperability: Stakeholder vehicle to accelerate exchange and interoper ability specifications ULS system test bed: Identify opportunities, implications, and test beds for ULS system approach Technical acceleration: Collaborative vehicle for computational scientists and HIT community Infrastructure Use Quality measures: Consensus on embedded outcome-focused quality measures Clinical research: Cooperative network to advance distributed research capacity and core measures Identity resolution: Consortium to address patient identification across the system Governance Governance and coordination: Determination and implementation of govern ing principles, priorities, system specifications, and cooperative strategies
|
From page 42... ...
This emphasis was reinforced by the approach taken by the PCAST report to encourage the development of a market around digital health information exchange. Support of methods that apply serious analytical rigor to these issues and generate both technical and policy suggestions were identified as being crucial to this effort.
|
From page 43... ...
, query and analyze distributed repositories of data for research purposes, ensure care decision support, and enable quality improvement initiatives and public health surveillance and reporting. Discussions also touched on the need for the digital infrastructure to interface with next-generation systems including mobile health applications and the way in which these and other capacities could help engage patients and the public through improved information access.
|
From page 44... ...
It was stated several times that in order to support the quality improvement and research activities required for a learning system, consensus around useful outcome-based measures is needed. Participants suggested that this would motivate vendors and users to incorporate these measures into their systems, driving seamless integration of quality measurement and reporting into the digital infrastructure.
|
From page 45... ...
One of the major barriers discussed for several key system functions -- care appropriateness, continuity, quality assessment, and research -- relates to the current inability to reliably track and link individual patients with their associated information across the health system. This poses a problem for issues around care coordination, including the goal of being able to make care decisions based on comprehensive health information, as well as the development of a useful knowledge generation engine that can incorporate all relevant information and deliver useful, accurate support.
|
From page 46... ...
In order to further the utility of EHRs in clinical research and population health, participants suggested core data elements for EHRs, and seamless access to information from immunization registries. Reflecting the extensive discussion on the opportunity for using the digital infrastructure to better engage patients in their health care, participants suggested the addition of lay-interpretable language for patient-accessible information, and incorporation of patient-generated data.
|
From page 47... ...
STAGE 2: 2013–2014 Stage 2 of meaningful use is under development by the HIT Policy Commit tee, including consideration of further focus on advanced clinical processes such as clinical decision support, disease management, patient access to health infor mation, quality measurement, research, public health, and interoperability across IT systems. The following are items underscored in IOM discussions as being of particular and immediate importance to the impact of stage 2 enhancements on progress toward the Digital Infrastructure for the Learning Health System: • ntegration of semantic interoperability and exchange standards, including I data provenance and context • lements fostering seamless integration of clinical decision support E • se of lay-interpretable language for patient-accessible EHR information U • ncorporation of patient-generated data, including patient preferences I • nclusion of core data elements that facilitate use of EHR data for clinical I research.
|
From page 48... ...
Stakeholder Responsibilities and Opportunities Throughout each workshop, frequent reference was made to leadership responsibilities that fell naturally to individual stakeholders, or groups of stakeholders, to advance progress in the development of the digital infrastructure for the learning health system. In many cases, this involves leveraging ongoing efforts or building upon them with an orientation toward a continuous learning system.
|
From page 49... ...
The CDC's focus on population health places it at the center of extending the scope of the digital infrastructure beyond health care. This carries implications for almost all elements of the system, but will be especially important for the support of public health processes and research as well as public engagement.
|
From page 50... ...
As the stewards of the largest stores of clinical and transactional information outside of the federal government, insurers, payers, and product developers have an essential role to play in development of the digital infrastructure. Their use of transactional health data to assess utilization patterns, effectiveness, and efficiency is a foundational block on which
|
From page 51... ...
Funding for these communities was noted as a clear opportunity for collaboration between NSF and NIH. Additionally, discussions highlighted that much work remains to be done in order to maximize the knowledge generation capabilities of the digital infrastructure, and that clinical research and product development communities have an essential role in building this capacity.
|
From page 52... ...
2010. Realizing the full potential of health information technology to improve healthcare for Americans: The path forward.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.