National Academies Press: OpenBook
Suggested Citation:"Front Matter." 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.
×

THE LEARNING HEALTH SYSTEM SERIES

ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE

DIGITAL INFRASTRUCTURE FOR
THE LEARNING HEALTH SYSTEM

The Foundation for Continuous
Improvement in Health and Health Care

Workshop Series Summary

Claudia Grossmann, Brian Powers, and J. Michael McGinnis,
Rapporteurs and Editors

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." 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.
×

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, N.W.   Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

This project was supported by the Office of the National Coordinator for Health Information Technology. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

International Standard Book Number-13:   978-0-309-15416-1
International Standard Book Number-10:   0-309-15416-2

Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu.

For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.

Copyright 2011 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

Suggested citation: IOM (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.

Suggested Citation:"Front Matter." 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.
×

Knowing is not enough; we must apply.
Willing is not enough; we must do.
”      

                                                —Goethe

image

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." 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.
×

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." 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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ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1

Mark B. McClellan (Chair, 2011-Present), Director, Engelberg Center for Healthcare Reform, The Brookings Institution

Denis A. Cortese (Chair, 2006-2011), Emeritus President and Chief Executive Officer, Mayo Clinic; Foundation Professor, ASU

Donald Berwick, Administrator, Centers for Medicare & Medicaid Services (ex officio)

Bruce G. Bodaken, Chairman, President, and Chief Executive Officer, Blue Shield of California

David R. Brennan, Chief Executive Officer, AstraZeneca PLC

Paul Chew, Chief Science Officer and CMO, sanofi-aventis U.S., Inc.

Carolyn M. Clancy, Director, Agency for Healthcare Research and Quality (ex officio)

Michael J. Critelli, Chief Executive Officer, Dossia

Helen Darling, President, National Business Group on Health

Thomas R. Frieden, Director, Centers for Disease Control and Prevention (designee: Chesley Richards) (ex officio)

Patricia A. Gabow, Chief Executive Officer, Denver Health & Hospital Authority

Atul Gawande, General and Endocrine Surgeon, Brigham and Women’s Hospital

Gary L. Gottlieb, President and CEO, Partners HealthCare System

James A. Guest, President, Consumers Union

George C. Halvorson, Chairman and Chief Executive Officer, Kaiser Permanente

Margaret A. Hamburg, Commissioner, Food and Drug Administration (ex officio)

James Heywood, Chairman, PatientsLikeMe

Carmen Hooker Odom, President, Milbank Memorial Fund

Ardis Hoven, Immediate Past Board Chair, American Medical Association

Brent James, Chief Quality Officer and Executive Director, Institute for Health Care Delivery Research, Intermountain Healthcare

Michael M. E. Johns, Chancellor, Emory University

Craig Jones, Director, Vermont Blueprint for Health

Cato T. Laurencin, Director, Regenerative Engineering, University of Connecticut

Stephen P. MacMillan, President and Chief Executive Officer, Stryker

___________________

1 Formerly the Roundtable on Evidence-Based Medicine. Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution.

Suggested Citation:"Front Matter." 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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Sheri S. McCoy, Vice Chair, Executive Committee, Johnson & Johnson

Farzad Mostashari, National Coordinator, Office of the National Coordinator for Health IT (ex officio)

Elizabeth G. Nabel, President, Brigham and Women’s Hospital

Mary D. Naylor, Professor and Director, NewCourtland Center, University of Pennsylvania

Peter Neupert, Corporate Vice President, Health Solutions Group, Microsoft Corporation

William D. Novelli, Former CEO, AARP; Professor, Georgetown University

Jonathan B. Perlin, President, Clinical and Physician Services (Health), HCA, Inc.

Robert A. Petzel, Under Secretary (Health), Department of Veterans Affairs (ex officio)

Richard Platt, Professor and Chair, Population Medicine, Harvard Medical School

John C. Rother, Group Executive Officer, AARP

John W. Rowe, Professor, Mailman School of Public Health, Columbia University

Susan Shurin, Acting Director, National Heart, Lung, and Blood Institute (ex officio)

Mark D. Smith, President and CEO, California HealthCare Foundation

Glenn D. Steele, President and Chief Executive Officer, Geisinger Health System

Reed D. Tuckson, Executive VP and Chief of Medical Affairs, UnitedHealth Group

Frances M. Visco, President, National Breast Cancer Coalition

Jonathan Woodson, Assistant Secretary for Health Affairs (Acting), Department of Defense (designee: Michael Dinneen) (ex officio)

Workshop Planning Committee2

Laura L. Adams (Chair), Rhode Island Quality Institute

Kenneth Buetow, National Institutes of Health

Janet Corrigan, National Quality Forum

Gregory Downing, Health and Human Services

Christopher Greer, Office of Science and Technology Policy

John Halamka, Beth Israel Deaconness Medical Center

Rebecca Kush, Clinical Data Interchange Standards Consortium

Martin LaVenture, Minnesota Department of Health

___________________

2 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." 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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Kenneth Mandl, Children’s Hospital Boston

Daniel Masys, Vanderbilt University

David McCallie, Cerner Corporation

Anthony Rodgers, Centers for Medicare & Medicaid Services

David Ross, Public Health Informatics Institute

Edward Shortliffe, American Medical Informatics Association

Jonathan Silverstein, University of Chicago (former, now NorthShore University Health System)

James Walker, Geisinger Health System

Jon White, Agency for Healthcare Research and Quality

Roundtable Staff

Neha Agarwal, Intern (through August 2010)

Christie Bell, Financial Associate

Malcolm Biles, Program Assistant (through October 2010)

Greta Gorman, Editorial Projects Manager

Claudia Grossmann, Program Officer

J. Michael McGinnis, Senior Scholar and Executive Director

Brian Powers, Senior Program Assistant

Elizabeth Rach, Research Assistant (through November 2010)

Valerie Rohrbach, Program Assistant

Julia Sanders, Program Assistant

Robert Saunders, Program Officer

Leigh Stuckhardt, Program Associate

Kate Vasconi, Senior Program Assistant (through January 2011)

Isabelle Von Kohorn, Program Officer

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Suggested Citation:"Front Matter." 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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Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Robert Califf, Duke University

Art Davidson, Denver Public Health

Shelley A. Hearne, The Pew Charitable Trusts

Carl Kesselman, University of Southern California

Kristen Rosati, Coppersmith Schermer & Brockelman PLC

Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Christopher Forrest, Children’s Hospital of Philadelphia. Appointed by the National Research Council and the Institute of Medicine, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the editors and the institution.

Suggested Citation:"Front Matter." 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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×

Institute of Medicine
Roundtable on Value & Science-Driven Health Care
Charter and Vision Statement

The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. Participants have set a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change.

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The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. We seek the development of a learning health system that is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care.

Vision: Our vision is for a healthcare system that draws on the best evidence to provide the care most appropriate to each patient, emphasizes prevention and health promotion, delivers the most value, adds to learning throughout the delivery of care, and leads to improvements in the nation’s health.

Goal: By the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of performance, that it should be feasible with existing resources and emerging tools, and that measures can be developed to track and stimulate progress.

Context: As unprecedented developments in the diagnosis, treatment, and long-term management of disease bring Americans closer than ever to the promise of personalized health care, we are faced with similarly unprecedented challenges to identify and deliver the care most appropriate for individual needs and conditions. Care that is important is often not delivered. Care that is delivered is often not important. In part, this is due to our failure to apply the evidence we have about the medical care that is most effective—a failure related to shortfalls in provider knowledge and accountability, inadequate care coordination and support, lack of insurance, poorly aligned payment incen-

Suggested Citation:"Front Matter." 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.
×

tives, and misplaced patient expectations. Increasingly, it is also a result of our limited capacity for timely generation of evidence on the relative effectiveness, efficiency, and safety of available and emerging interventions. Improving the value of the return on our healthcare investment is a vital imperative that will require much greater capacity to evaluate high-priority clinical interventions, stronger links between clinical research and practice, and reorientation of the incentives to apply new insights. We must quicken our efforts to position evidence development and application as natural outgrowths of clinical care—to foster health care that learns.

Approach: The IOM Roundtable on Value & Science-Driven Health Care serves as a forum to facilitate the collaborative assessment and action around issues central to achieving the vision and goal stated. The challenges are myriad and include issues that must be addressed to improve evidence development, evidence application, and the capacity to advance progress on both dimensions. To address these challenges, as leaders in their fields, Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change.

Activities include collaborative exploration of new and expedited approaches to assessing the effectiveness of diagnostic and treatment interventions, better use of the patient care experience to generate evidence on effectiveness, identification of assessment priorities, and communication strategies to enhance provider and patient understanding and support for interventions proven to work best and deliver value in health care.

Core concepts and principles: For the purpose of the Roundtable activities, we define evidence-based medicine broadly to mean that, to the greatest extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers, and policy makers alike—will be grounded on a reliable evidence base, will account appropriately for individual variation in patient needs, and will support the generation of new insights on clinical effectiveness. Evidence is generally considered to be information from clinical experience that has met some established test of validity, and the appropriate standard is determined according to the requirements of the intervention and clinical circumstance. Processes that involve the development and use of evidence should be accessible and transparent to all stakeholders.

A common commitment to certain principles and priorities guides the activities of the Roundtable and its members, including the commitment to the right health care for each person; putting the best evidence into practice; establishing the effectiveness, efficiency, and safety of medical care delivered; building constant measurement into our healthcare investments; the establishment of healthcare data as a public good; shared responsibility distributed equitably across stakeholders, both public and private; collaborative stakeholder involvement in priority setting; transparency in the execution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good.

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Suggested Citation:"Front Matter." 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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Foreword

Marshaling the best information has always been fundamental to the success of all aspects of health and health care—medical diagnosis and treatment, quality improvement, public health and health research. What is different today—and what makes this field so exciting—is the possibility, through digital data systems, to have information that is not only relevant to actions and decisions for the delivery of care, but is available, accessible, transferable, usable, and manipulatable in a way that integrates information from a number of sources and provides unprecedented opportunity for learning and improvement.

Improvement is clearly vital. In 2001, the Institute of Medicine issued its landmark report, Crossing the Quality Chasm, which drew the nation’s attention sharply to the fact that health care in the United States was falling far short of its potential. The central lesson in that report was, in effect, that the nation needed a continuously improving learning health system that reliably delivered the best outcome. In 2006, the Institute of Medicine chartered the Roundtable on Evidence-Based Medicine, now the Roundtable on Value & Science-Driven Health Care, to engage key stakeholders in a discussion of ways to ensure that better information is available and used to transform healthcare delivery in this country. The Roundtable brings together patients, consumers, providers, researchers, health product manufacturers, payers, employees, and policy makers to discuss health reform priorities in a neutral venue and identify key impediments to progress toward a patient-centered learning health system. The Roundtable’s vision of a learning health system describes a health infrastructure characterized by evidence-based care that ensures proper decision making for each patient

Suggested Citation:"Front Matter." 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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and provider, and generates scientific evidence as a natural by-product of the care process.

Building on previous efforts to characterize, develop, and implement the infrastructure for a learning health system, and with generous support from the Office of the National Coordinator for Health Information Technology, the Roundtable convened stakeholders from across the healthcare and information technology fields in a series of workshops whose discussions are summarized in this volume, Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care.

This compilation summarizes the presentations and discussions from the series, which look at the role of the digital health data systems and how they can be used to provide the information backbone for a learning health system. Participants worked to identify the opportunities, challenges, and priorities represented by the application of new information systems to health care and to consider strategy options that could further the development of a learning health system.

I would like to extend my personal thanks especially to David Blumenthal and his Office of the National Coordinator for Health Information Technology, its Chief Scientist, Charles Friedman, to the Planning Committee assembled for the series, to the Roundtable membership for their continued leadership and commitment to advancing health care in this nation, and to the Roundtable staff for their contributions in coordinating and supporting the meeting series and ongoing Roundtable activities.

Harvey V. Fineberg, M.D., Ph.D.
President, Institute of Medicine

Suggested Citation:"Front Matter." 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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Preface

Spurred by the growing potential of the availability of large amounts of digital health information to improve the quality of health care in this country, the Roundtable on Value & Science-Driven Health Care, with the support of the Office of the National Coordinator for Health Information Technology, convened the three-part workshop series summarized in this volume, Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care. Stakeholders from across the health system—including patient advocates, providers, researchers, privacy experts, computer scientists, and policy makers—met to discuss the opportunities and challenges presented by the application of advanced information technology systems to health and health care. This summary of the workshop presentations and discussions conveys the thoughts of field leaders, and the views they shared on important strategy elements and next steps to transform the information infrastructure of the American health system into one characterized by patient engagement and continuous improvement.

The vision of the Institute of Medicine (IOM) Roundtable on Value & Science-Driven Health Care is to help advance the development of a learning health system in which evidence is generated in a timely manner by capturing results of the care process, and applied effectively and efficiently to ensure best care practices. Since its inception in 2006, the Roundtable has set out to advance this vision through collaborative initiatives, public workshops, and published proceedings that involve senior leadership from key healthcare stakeholders. Building on previous work of the Roundtable to identify the structural components of a learning health system, this

Suggested Citation:"Front Matter." 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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workshop considered the transformational power of digital technology in health and health care.

Workshop participants focused their discussion on four important cross-cutting dimensions of the opportunities and challenges: promoting technical advances and innovation, knowledge generation and use, engaging patients and the public, and fostering stewardship and governance. Initial discussions focused on mapping the current state of play with respect to these areas and on the ways in which a developed digital infrastructure presents challenges and opportunities within each realm. Next, participants worked together to envision innovative approaches to the way in which a learning health system would be supported by a powerful, nimble, and secure digital infrastructure. The final stages of the series were centered on developing concrete strategy options whereby specific actors could work to accelerate the effective implementation of advances in building this learning health system.

Numerous organizations and individuals devoted their time and efforts in developing this workshop summary. We, of course, also wish to acknowledge and offer strong appreciation for the contributors to this volume for their insightful perspectives and observations. In this respect, we should emphasize that this workshop summary is intended to convey only the views and opinions of individuals participating in this workshop. As such, it is not intended to express or reflect the opinions of the Roundtable on Value & Science-Driven Health Care, its sponsors, or IOM.

In particular, we are indebted to the members of the expert IOM Planning Committee, who worked to guide and shape a series of productive and insightful workshop discussions. We were privileged to have the following individuals represented on the committee: Laura Adams (Chair) (Rhode Island Quality Institute), Ken Buetow (National Institutes of Health), Janet Corrigan (National Quality Forum), Greg Downing (U.S. Department of Health and Human Services), Chris Greer (Office of Science and Technology Policy), John Halamka (Beth Israel Deaconness Medical Center), Rebecca Kush (Clinical Data Interchange Standards Consortium), Martin LaVenture (Minnesota Department of Health), Ken Mandl (Children’s Hospital Boston), Dan Masys (Vanderbilt University), David McCallie (Cerner Corporation), Anthony Rodgers (Centers for Medicare & Medicaid Services), David Ross (Public Health Informatics Institute), Edward Shortliffe (American Medical Informatics Association), Jonathan Silverstein (University of Chicago), James Walker (Geisinger Health System), and Jon White (Agency for Healthcare Research and Quality).

Under the leadership of IOM Program Officer Claudia Grossmann, a number of Roundtable staff played instrumental roles in coordinating the workshops and translating the workshop proceedings into this summary, including Neha Agarwal, Christie Bell, Malcolm Biles, Brian Powers,

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Suggested Citation:"Front Matter." 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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Elizabeth Rach, Robert Saunders, and Kate Vasconi. We would also like to acknowledge National Academy of Sciences colleagues Jon Eisenberg and Herb Lin who participated in the meetings and provided valuable counsel on the technical components of these issues. Finally, we would also like to thank Greta Gorman, Christine Stencel, Vilija Teel, and Jordan Wyndelts for helping to coordinate the various aspects of review, production, and publication.

Successfully developing and implementing the next generation of the digital infrastructure for the learning health system will require considerable additional effort and collaboration. We believe the perspectives summarized in Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care will be a very important resource not only with respect to the vision of the possible, but to the practical near-term decisions and actions of leaders and stakeholders in many quarters.

Laura L. Adams
Planning Committee Chair

Denis A. Cortese
Chair, Roundtable on Value & Science-Driven Health Care
(2006-2011)

Mark B. McClellan
Chair, Roundtable on Value & Science-Driven Health Care
(2011-Present)

J. Michael McGinnis
Executive Director,
Roundtable on Value & Science-Driven Health Care

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Suggested Citation:"Front Matter." 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:"Front Matter." 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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Abbreviations and Acronyms

ADE

adverse drug event

AHRQ

Agency for Healthcare Research and Quality

AMI

acute myocardial infarction

API

Application Programming Interface

ARB

antinogensin receptor blocker

ARRA

American Reinvestment and Recovery Act (2009)

ASTER

Adverse Drug Event Spontaneous Triggered Events Recording

ATM

automated teller machine

 
BIRN

Biomedical Informatics Research Network

BRIDG

Biomedical Research Integrated Domain Group

 
caBIG

cancer Biomedical Informatics Grid

CAMD

Coalition Against Major Diseases

CC

Coordinating Committee

CCD

Continuity of Care Document

CDASH

Clinical Data Acquisition Standards Harmonization

CDC

Centers for Disease Control and Prevention

CDISC

Clinical Data Standards Interchange Consortium

CER

comparative effectiveness research

CHCF

California HealthCare Foundation

CMMI

Center for Medicare & Medicaid Innovation

CMS

Centers for Medicare & Medicaid Services

CTSA

Clinical and Translational Science Award

Page xxiv Cite
Suggested Citation:"Front Matter." 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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CTSA

Clinical and Translational Science Award

CVRG

CardioVascular Research Grid

 
DALY

disability-adjusted life year

DOD

Department of Defense

 
ED

emergency department

EHR

electronic health record

EISA

Energy Independence and Security Act

ELSE

ethical, legal, social, and economic issues

EMA

European Medicines Agency

EU

European Union

EVS

Enterprise Vocabulary Services

 
FCC

Federal Communications Commission

FDA

Food and Drug Administration

FDAAA

Food and Drug Administration Amendments Act

FERC

Federal Energy Regulatory Commission

FHA

Federal Health Architecture

FPC

Federal Partners’ Collaboration

 
GE

General Electric

GWAS

genome-wide association study

 
HHS

U.S. Department of Health and Human Services

HIE

health information exchange

HISB

American National Standards Institute’s Healthcare Informatics Standards Board

HISPP

Health Information Standards Planning Panel

HITECH

Health Information Technology for Economic and Clinical Health Act

HITSC

Healthcare Information Technology Standards Committee

HITSP

Healthcare Information Technology Standards Panel

HMO

health maintenance organization

HMORN

HMO Research Network

HRSA

Health Resources and Services Administration

 
ICD

International Classification of Diseases

ICT

information and communications technology

IEEE

Institute of Electrical and Electronics Engineers

IEPD

Information Exchange Package Documentation

IETF

Internet Engineering Task Force

Suggested Citation:"Front Matter." 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.
×
IHE

Integrating the Healthcare Enterprise

INPC

Indiana Network for Patient Care

IOM

Institute of Medicine

IRB

institutional review board

ISO

independent system operator

IT

information technology

 
KP

Kaiser Permanente

 
LOINC

Logical Observation Identifiers Names and Codes

 
MSCC

Mini-Sentinel Coordinating Center

 
NCI

National Cancer Institute

NCVHS

National Committee on Vital and Health Statistics

NDA

new drug application

NHS

National Health Service (UK)

NIEM

National Information Exchange Model

NIGB

National Information Governance Board for Health and Social Care (UK)

NIH

National Institutes of Health

NIST

National Institute of Standards and Technology

NLM

National Library of Medicine

NQF

National Quality Forum

NWHIN

Nationwide Health Information Network

 
OMB

Office of Management and Budget

ONC

Office of the National Coordinator for Health Information Technology

 
PCAST

President’s Council on Science and Technology

PCHR

personally controlled health record

PCORI

Patient-Centered Outcomes Research Institute

PHI

protected health information

PHIN-NCMT

Public Health Information Network Notifiable Condition Mapping Table

PHR

personal health record

PopHR

Population Health Record

 
RDF

Resource Description Framework

RFD

Retrieve Form for Data Capture

RTO

regional transmission organization

RWJF

Robert Wood Johnson Foundation

Page xxvi Cite
Suggested Citation:"Front Matter." 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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SDK

Software Development Kit

SDTM

Study Data Tab Model

SHARP

Strategic Health Information Technology Advanced Research Projects

SNOMED

Systematized Nomenclature of Medicine

SWRL

Semantic Web Rule Language

 
TATRC

Telemedicine and Advanced Technology Research Center

TC

Technical Committee

 
UK

United Kingdom

ULS

ultra-large-scale

 
VA

Department of Veterans’ Affairs

VHA

Veterans Health Administration

VistA

Veterans Health Information Systems and Technology Architecture

VLER

Virtual Lifetime Electronic Record

VPN

virtual private network

 
WHO

World Health Organization

 
XACML

eXtensible Access Control Markup Language

Suggested Citation:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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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Page viii Cite
Suggested Citation:"Front Matter." 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:"Front Matter." 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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Page xiii Cite
Suggested Citation:"Front Matter." 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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Page xviii Cite
Suggested Citation:"Front Matter." 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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Page xxii Cite
Suggested Citation:"Front Matter." 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:"Front Matter." 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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Page xxiv Cite
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Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary Get This Book
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Like many other industries, health care is increasingly turning to digital information and the use of electronic resources. The Institute of Medicine's Roundtable on Value & Science-Driven Health Care hosted three workshops to explore current efforts and opportunities to accelerate progress in improving health and health care with information technology systems.

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