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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.

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

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FWorkshop Agendas

Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care

An Institute of Medicine Workshop Series Sponsored by the Office of the National Coordinator for Health Information Technology

Series objectives

  1. Foster a shared understanding of the vision for the electronic infrastructure for continuous learning and quality-driven health and healthcare programs.
  2. Explore current capacity, approaches, incentives, and policies; and identify key technologic, organizational, policy, and implementation priorities.
  3. Discuss the characteristics of potentially disruptive, breakthrough developments.
  4. Consider strategy options and priorities for accelerating progress on the approach to the infrastructure, and for moving beyond to a more seamless learning enterprise.

Issues motivating the discussion

  • Rapid developments in information technology that substantially facilitate potential use of health data for knowledge generation, and expedited application of new knowledge for clinical care.
  • Policy initiatives that will lead in the near future to the electronic capture and storage of virtually all clinical data, as well as data from several related areas of health—health care, public health, clinical research—to realize the system’s full potential for individuals and populations.
  • Promising potential in federated/distributed approaches that allow data to remain local while still enabling querying and pooling of summary data across systems.
  • Ongoing innovation in search technologies with the potential to accelerate use of available data from multiple sources for new insights.
  • Meaningful use criteria and health reform provisions that provide starting points and incentives for the development of a learning system for quality improvement and population health, while underscoring the need to be strategic on issues and opportunities, while maintaining flexibility to accommodate breakthrough capacities.
  • Need for careful attention to limiting the burden for health data collection to the issues most important to patient care and knowledge generation.
  • Requirement for governance policies that foster the data utility for the common good, cultivate the trust fabric with the public and between data sharing entities, and accelerate collaborative progress.
  • Availability of standards for aggregation of large pools of data for purposes such as CER, biomarker validation, disease modeling, and improving research processes.

WORKSHOP #1: OPPORTUNITIES, CHALLENGES, PRIORITIES

July 27–28, 2010

Venable Conference Facility

575 Seventh Street NW, Washington, DC 20001

Day One: Tuesday, July 27

8:00amCoffee and light breakfast available
8:30amWelcome, introductions, and overview
Welcome, framing of the meeting and workshop series, agenda overview
  • Michael McGinnis (Institute of Medicine)
  • Charles Friedman (Office of the National Coordinator for Health IT)
  • Laura Adams (Planning Committee Chair, Rhode Island Quality Institute)
9:00amSession 1: Visioning perspectives on the electronic health utility
National leader/decision maker from each of several key areas will offer a perspective on the vision and opportunities for the electronic health utility, briefly describe the current state of the infrastructure, its use relative to the potential, and the key actions and priorities moving forward.
Moderator: Laura Adams (Rhode Island Quality Institute)

Individual and patient perspective

Adam Clark (Lance Armstrong Foundation)

Practicing clinician perspective

James Walker (Geisinger)

Quality and safety perspective

Janet Corrigan (National Quality Forum)

Clinical research perspective

Christopher Chute (Mayo Clinic)

Population health perspective

Martin LaVenture (Minnesota Department of Health)

OPEN DISCUSSION
11:00amSession 2: Technical strategies: data input, access, use—and beyond
Presentations to consider issues, needs, and approaches related to data input, access and use—as well as infrastructure requirements to foster web-mediated remote-site interventions—for continuous learning and improvement in health and health care.
Moderator: Chris Greer (Office of Science and Technology Policy)

Building on the foundation of meaningful use

Doug Fridsma (Office of the National Coordinator for Health IT)

Interoperability for the learning healthcare system

Rebecca Kush (Clinical Data Interchange Standards Consortium)

Grids, federations, and clouds

Jonathan Silverstein (University of Chicago)

Querying heterogeneous data

Shaun Grannis (Regenstrief Institute)

A panel of responders from the quality, clinical research, and population health communities to respond to presentations, share their experiences, and propose solutions.
 Ida Sim (University of California, San Francisco)
 John Halamka (Beth Israel Deaconess Medical Center)
 Robert Kahn (Corporation for National Research Initiatives)
OPEN DISCUSSION
1:00pmLunch
1:30pmSession 3: Ensuring engagement of population and patient needs
Presentations to consider issues, needs, and approaches in use of the electronic infrastructure to address compelling priorities in patient and population health improvement.

Transparency on cost/outcomes at individual and population levels

Mark McClellan (Brookings Institution)

Integrated use of personal and population-wide data sources

Kenneth Mandl (Harvard University)

Optimizing chronic disease care and control

Sophia Chang (California HealthCare Foundation)

Targeting population health disparities

Christopher Gibbons (Johns Hopkins University)

A panel of responders to respond to presentations, share their experiences, and propose solutions.
 Don Kemper (Healthwise)
 Eric Larson (Group Health)
 Patricia Brennan (University of Wisconsin)
OPEN DISCUSSION
3:30pmSession 4: Weaving a strong trust fabric
Presentations to consider issues, needs, and approaches related to building the broad-scale confidence necessary for operation of the electronic infrastructure for continuously learning and improving health and healthcare programs.
Moderator: Mark Frisse (Vanderbilt University)

Facilitating and chronicling data use for better health/health care

Edward Shortliffe (American Medical Informatics Association)

Privacy and consent strategies

Deven McGraw (Center for Democracy and Technology)

HIPAA and a learning healthcare system

Bradley Malin (Vanderbilt)

System security

Ian Foster (Argonne National Lab)

A panel of responders from ongoing collaborative efforts and experts with big-picture perspectives to respond to presentations, share their experiences, and propose solutions.
 Robert Shelton (Private Access, Inc.)
 Kristen Rosati (Coppersmith Schermer & Brockelman PLC)
 Richard Platt (Harvard Pilgrim)
OPEN DISCUSSION
5:30pmConcluding Keynote
David Blumenthal (National Coordinator for Health IT)
6:00pmAdjourn to reception

Day Two: Wednesday, July 28

8:30amWelcome and Recap of First Day
9:00amSession 5: Stewardship and governance in the learning health system
Presentations on issues, needs, approaches, and arrangements—formal and informal, public and private, national and international—necessary to steward the development of a digital infrastructure to deliver health data and information that is timely, user-friendly, secure, reliable, research-ready, supports continuous learning and accelerated improvements in health and health care.
Moderator: Michael Kahn (Children’s Hospital Denver)

Governance coordination, needs, and options

Laura Adams (Rhode Island Quality Institute)

Harmonizing compliance, and enforcement requirements Theresa Mullin (Food and Drug Administration)

Research access and prioritization issues Shawn Murphy (Partners Healthcare)

A case study in governance: The National Information Governance Board for Health and Social Care (UK)

Harry Cayton (National Information Governance Board)

A panel of responders from ongoing efforts and experts with big-picture perspectives to respond to presentations, share their experiences, and propose solutions.
 Rachel Nosowsky (University of California)
 Don Detmer (University of Virginia)
 Meryl Bloomrosen (American Medical Informatics Association)
 Doug Peddicord (Oldaker, Belair & Wittie)
OPEN DISCUSSION
11:00amSession 6: Fostering the global dimension of the health data trust
Presentations to consider issues, needs, and approaches related to setting the stage for evolution of an electronic infrastructure that can serve as a global resource for continuous learning and improvement for health and healthcare programs.
Moderator: Michael Ibara (Pfizer)

Transform

Brendan Delaney (Kings College London)

HealthGRID/SHARE

Tony Solomonides (University of the West England, Bristol)

Global collaborative safety strategies

Ashish Jha (Harvard University)

Global public health strategies

David Buckeridge (McGill University)

OPEN DISCUSSION
12:30pmLunch
1:00pmSession 7: Perspectives on Innovation
Thought leader participants from across stakeholder groups as well as from outside the health field to reflect on the meeting’s discussions, respond to questions, and offer unique insights and novel perspectives on innovation strategies for the electronic infrastructure supporting continuous learning and improvement in health and health care.
 Daniel Friedman (Population and Public Health Information Services)
 Molly Coye (Public Health Institute)
 Matthew Holt (Health 2.0)
 Michael Liebhold (Institute for the Future)
OPEN DISCUSSION
2:30pmSession 8: Breakout sessions
Five small groups will assemble with representation spanning the affinity groups of interest—individual and patient, practicing clinician, quality improvement experts, clinical researchers, and population health—to identify key principles and strategies for development of the electronic infrastructure envisioned—including identification of questions addressed to the panel of responders.
4:00pmSession 9: Reporting back to the group
This session will feature reports back from small groups on proposed strategic approaches, followed by discussion across groups, and identification of common themes across approaches, challenges, and solutions.
OPEN DISCUSSION
5:30pmSummary, Next Steps, and Concluding Remarks
6:00pmAdjourn

WORKSHOP #2: THE SYSTEM AFTER NEXT

September 7–8, 2010

Keck Center, The National Academies

500 Fifth Street NW, Washington, DC 20001

Day One: Tuesday, September 7

8:00amCoffee and light breakfast available
8:30amWelcome, introductions, and overview
Welcome, framing of the meeting and workshop series, agenda overview
  • Harvey Fineberg (Institute of Medicine)
  • Charles Friedman (Office of the National Coordinator for Health IT)
  • Laura Adams (Planning Committee Chair, Rhode Island Quality Institute)
  • Michael McGinnis (Institute of Medicine)
9:30amThree breakout groups: patient and public, technical issues, governance
Three breakout groups clustered according to participant expertise/interest with respect to technical advancement, governance and patient/public engagement. Each group will be tasked with using the preparatory group’s proposed categories and component issues as a starting point to develop and present the framework and most important relevant options for a national strategy. A 10- to 15-minute presentation by a representative of the relevant breakout group will lead off the corresponding plenary session.
12:00pmLunch/Poster session
1:00pmSystem requirements for technical advancement and innovation
Technical issues constitute the basic starting point for progress in the electronic infrastructure for health improvement. These include the overlapping sets of issues related to information processing models, vocabulary value sets, human–computer interaction, and security frameworks. Progress is dependent not only on identifying and engaging the specific elements within each set, but on achieving the right balance between the potential for facilitative standardization and the need for adaptive flexibility and innovation. The session will begin with a 10- to 15-minute presentation from a representative from the “Technical advancement and innovation” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/as appropriate, brief input from resource people for the case studies identified.
OPEN DISCUSSION
3:00pmBreak
3:15pmRequirements for establishment of stewardship and governance
Stewardship and governance provisions are intimately related to the pace at which the developing technical capacity of the electronic infrastructure emerges and is applied for continuous improvement in health and health care. The trust and cooperative environment engendered in the existence, nature, stakeholder representation, and implementation of such provisions will determine the availability and impact of this electronic utility. The session will begin with a 10- to 15-minute presentation from a representative from the “Stewardship and governance” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/as appropriate, brief input from resource people for the case studies identified.
OPEN DISCUSSION
5:30pmConcluding comments
6:00pmAdjourn to reception

Day Two: Wednesday, September 8

8:30amWelcome
9:00amRequirements for patient and public engagement
Where stakeholder acceptance is involved, it generally comes down to “What’s in it for me?” A precondition for progress in the e-health utility is the appreciation and acceptance—the understanding and demand for the delivery of the benefits, and trust and confidence related to safeguards against risks. The session will begin with a 10- to 15-minute presentation from a representative from the “Patient and public engagement” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/as appropriate, brief input from resource people for the case studies identified.
OPEN DISCUSSION
11:00amSummary, next steps, and concluding remarks
Discussion will be summarized, priorities identified, and the plan for the progression to the final workshop laid out.
12:00pmAdjourn

WORKSHOP #3: STRATEGY SCENARIOS

October 5, 2010

House of Sweden

2900 K Street NW, Washington, DC 20007

Tuesday, October 5

8:00amCoffee and light breakfast available
8:30amWelcome, introductions, and overview
Welcome, framing of the meeting and workshop series, agenda overview
  • Charles Friedman (Office of the National Coordinator for Health IT)
  • Laura Adams (Planning Committee Chair, Rhode Island Quality Institute)
  • Michael McGinnis (Institute of Medicine)
9:00amReview of strategic options from Workshops 1 and 2
Overview of strategic options identified to accelerate development of the electronic ecosystem necessary for a continuously learning and improving health system.

Technical and knowledge generation issues and options

Christopher Chute (Mayo Clinic)

Individual engagement issues and options

Robert Shelton (Private Access, Inc.)

Governance issues and options

Laura Adams (Rhode Island Quality Institute)

OPEN DISCUSSION
10:00amReview of practical considerations
A discussion of the existing efforts and accompanying considerations that will be relevant to the development of strategy options.

Emerging communities of excellence

James Walker (Geisinger Health System)

Emerging drivers of interoperability, scale, and utility

Daniel Masys (Vanderbilt University)

Implications inherent ULS system dynamics

William Knaus (University of Virginia)

Levers for government and ONC as change agent

Charles Friedman (Office of the National Coordinator for Health IT)

OPEN DISCUSSION
11:00amBreakout groups
Participants are broken into three groups, each focused one of the following groups of issues: technical, knowledge generation and use, governance, and individual engagement.
For their respective areas, groups are asked to

Propose basic principles for approach

Consider and revise, as indicated, strategic options from overview, including alternative scenarios

Identify key stakeholders and responsibilities

Postulate timetables and expectations—and related assumptions

12:30pmLunch
1:00pmTechnical options, responsibilities, and expectations
OPEN DISCUSSION
2:00pmKnowledge generation and use options, responsibilities, and expectations
OPEN DISCUSSION
3:00pmBreak
3:15pmGovernance options, responsibilities, and expectations
OPEN DISCUSSION
4:15pmIndividual engagement options, responsibilities, and expectations
OPEN DISCUSSION
5:15pmConcluding comments
Copyright © 2011, National Academy of Sciences.
Bookshelf ID: NBK83552
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