National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

DIGITAL DATA IMPROVEMENT PRIORITIES
FOR CONTINUOUS LEARNING IN
HEALTH AND HEALTH CARE

Workshop Summary

Claudia Grossmann, Brian Powers, and Julia Sanders, Rapporteurs

Roundtable on Value & Science-Driven Health Care

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW   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. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

This study was supported by Contract/Grant No. HHSP23320110009EC between the National Academy of Sciences and the Office of the National Coordinator for Health Information Technology. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the project.

International Standard Book Number-13: 978-0-309-25941-5
International Standard Book Number-10: 0-309-25941-X

Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2013 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). 2013. Digital data improvement priorities for continuous learning in health and health care: Workshop summary. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

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

—Goethe

image

INSTITITE OF MEDICINE
OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

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. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

PLANNING COMMITTEE ON DIGITAL DATA PRIORITIES FOR CONTINUOUS LEARING1

JAMES WALKER (Chair), Chief Health Information Officer, Geisinger Health System

JUSTINE CARR, Chief Medical Officer, Steward Health Care

WILLIAM DuMOUCHEL, Chief Statistical Scientist, Oracle Health Sciences

JAMIE HEYWOOD, Chairman, PatientsLikeMe

REBECCA KUSH, President and CEO, Clinical Data Standards Interchange Consortium

LISA LEE, Chief Science Officer, Office of Surveillance, Epidemiology, and Laboratory Sciences, Centers for Disease Control and Prevention

THERESA MULLIN, Director, Office of Planning and Informatics, Center for Drug Evaluation and Research, Food and Drug Administration

LUCILA OHNO-MACHADO, Founding Chief, Biomedical Informatics, University of California, San Diego

RICHARD PLATT, Chair, Population Medicine, Harvard University

JIM SCANLON, Deputy Assistant Secretary for Planning and Evaluation (Science and Policy), U.S. Department of Health and Human Services

PAUL STANG, Senior Director of Epidemeology, Johnson & Johnson

WALTER SUAREZ, Director, Health IT Strategy and Policy, Kaiser Permanente

IOM Staff

CLAUDIA GROSSMANN, Senior Program Officer

BRIAN POWERS, Senior Program Assistant (through July 2012)

VALERIE ROHRBACH, Senior Program Assistant

JULIA SANDERS, Senior Program Assistant

ROBERT SAUNDERS, Study Director

LEIGH STUCKHARDT, Program Associate

ISABELLE VON KOHORN, Program Officer

BARRET ZIMMERMANN, Program Assistant

J. MICHAEL McGINNIS, Senior Scholar, Executive Director, Roundtable on Value & Science-Driven Health Care

___________________

1 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. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

This page is blank

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1

MARK B. McCLELLAN (Chair), Director, Engelberg Center, The Brookings Institution

DAVID BLUMENTHAL, President, The Commonwealth Fund

BRUCE G. BODAKEN, Chairman, President, and CEO, Blue Shield of California

PAUL CHEW, Chief Science Officer and Chief Medical Officer, Sanofi U.S.

CAROLYN M. CLANCY, Director, Agency for Healthcare Research and Quality (Ex Officio)

FRANCIS COLLINS, Director, National Institutes of Health (Ex Officio) (designee:

Susan Shurin)

HELEN DARLING, President, National Business Group on Health

SUSAN D. DEVORE, Chief Executive Officer, Premier, Inc.

RICHARD FANTE, Regional VP, Americans, AstraZeneca

JUDITH FAULKNER, Founder and CEO, Epic Health Systems

THOMAS R. FRIEDEN, Director, Centers for Disease Control and Prevention (Ex Officio) (designee:

Gail R. Janes)

PATRICIA A. GABOW, CEO, Denver Health

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 CEO, Kaiser Permanente

MARGARET A. HAMBURG, Commissioner, Food and Drug Administration (Ex Officio) (designee:

Peter Lurie) JAMES HEYWOOD, Co-Founder and Chairman, PatientsLikeMe

RALPH I. HORWITZ, Senior VP, Clinical Evaluation Sciences, GlaxoSmithKline

BRENT C. 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

GARY KAPLAN, Chairman and CEO, Virgina Mason Health System

RICHARD C. LARSON, Mitsui Professor, Massachusetts Institute of Technology

JAMES L. MADARA, CEO, American Medical Association

Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

FARZAD MOSTASHARI, National Coordinator, Office of the National Coordinator for Health IT (Ex Officio)

MARY D. NAYLOR, Professor and Director, Center for Transitions in Health, University of Pennsylvania

WILLIAM D. NOVELLI, Former CEO, AARP; Professor, Georgetown University

SAM NUSSBAUM, Executive VP, Clinical Health Policy and Chief Medical Officer, WellPoint, Inc.

JONATHAN B. PERLIN, Chief Medical Officer and President, Clinical & Physician Services, Hospital Corporation of America, Inc.

ROBERT A. PETZEL, Under Secretary for Health, Department of Veterans Affairs (Ex Officio)

RICHARD PLATT, Professor and Chair, Population Medicine, Harvard Medical School

JOHN W. ROWE, Professor, Mailman School of Public Health, Columbia University

JOE SELBY, Executive Director, PCORI

MARK D. SMITH, President and CEO, California HealthCare Foundation

GLENN D. STEELE, President and CEO, Geisinger Health System

MARILYN TAVENNER, Administrator, Centers for Medicare & Medicaid Services (Ex Officio) (designee: Patrick Conway)

REED D. TUCKSON, Executive VP and Chief of Medical Affairs, UnitedHealth Group

MARY WAKEFIELD, Administrator, Health Resources and Services Administration (Ex Officio)

DEBRA B. WHITMAN, Executive Vice President, Policy and International, AARP

JONATHAN WOODSON, Assistant Secretary for Health, Department of Defense (Ex Officio)

___________________

1 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 rapporteurs and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

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.

image

Vision: Our vision is for the development of a continuously learning health system in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation—with best practices seamlessly embedded in the care process and new knowledge captured as an integral by-product of the care experience.

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 incentives, 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

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

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 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 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 and efficiency of care, 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 science-driven health care 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 policymakers 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.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

Reviewers

This workshop summary 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 workshop summary as sound as possible and to ensure that the workshop summary 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 process. We wish to thank the following individuals for their review of this workshop summary:

Alfred DeMaria, Massachusetts Department of Public Health

Shaun Grannis, Regenstrief Institute, Inc.

Erin Holve, AcademyHealth

Jonathan Silverstein,

NorthShore University Health System Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Joy Keeler Tobin, MITRE. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the authors and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

This page is blank

Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

Preface

In light of the challenges and opportunities associated with the increasing amount of digital health and health-related information being generated and collected in modern society, the Institute of Medicine’s Roundtable on Value & Science-Driven Health Care, with the support of the Office of the National Coordinator for Health Information Technology, convened a workshop on Digital Data Priorities for Continuous Learning in Health and Health Care, which is summarized in this publication. Experts from a wide range of disciplines—including medicine, public health, informatics, health information technology, health care services research, health care quality reporting, biomedical research, clinical research, statistics, medical product manufacturing, health care payment and financing, and patient advocacy—met to explore the data quality issues and strategies central to the increasing capture and use of digital health data for knowledge development. This publication summarizes discussions to clarify understanding of, and accelerate progress around, data improvement priorities for the digital health data utility.

The vision of the Roundtable is for a health system in which learning is continuous, with medical evidence generated by capturing the care experience and applied to ensure and improve best care practices. Since its inception in 2006, the Roundtable has set out to help realize this vision through the involvement and support of senior leadership from key health care stakeholders. In engaging the nation’s leaders in workshops and other

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

activities, Roundtable members and colleagues provide guidance on issues important to advancing the development and use of a digital health data utility for knowledge generation and continuous improvement.

Building on this groundwork, the objectives of this workshop were to identify and characterize the current deficiencies in the reliability, availability, and usability of digital health data and consider strategies, priorities, and responsibilities to address such deficiencies. Content was structured to explore the data quality challenges and opportunities in a learning health system associated with population and care process management, clinical research, translational informatics, and public health support at the national and state level. Workshop discussion also explored the potential for learning from large-scale health datasets, focusing on innovative approaches to overcoming the challenges of distributed data, data harmonization, and identity resolution.

Multiple individuals donated valuable time toward the development of this publication. We would like to acknowledge and offer strong appreciation for the contributors to this volume for their presence at the workshop and their efforts to further develop their presentations into the summaries contained in this publication. We are especially indebted to those who provided counsel by serving on the planning committee for this workshop, including Justine Carr (Steward Health Care), William DuMouchel (Oracle Health Sciences), Jamie Heywood (PatientsLikeMe), Rebecca Kush (Clinical Data Standards Interchange Consortium), Lisa Lee (CDC, Office of Surveillance, Epidemiology, and Laboratory Services), Theresa Mullin (FDA, Center for Drug Evaluation and Research), Lucila Ohno-Machado (University of California, San Diego), Richard Platt (Harvard University), Jim Scanlon (Department of Health and Human Services), Paul Stang (Johnson & Johnson), and Walter Suarez (Kaiser Permanente).

Under the leadership of senior program officer Claudia Grossmann, a number of Roundtable staff played instrumental roles in coordinating the workshop and translating the workshop proceedings into this summary, including Brian Powers, Valerie Rohrbach, Julia Sanders, Robert Saunders, Leigh Stuckhardt, and Isabelle Von Kohorn. We would also like to thank Daniel Bethea, Laura Harbold DeStefano, Christine Stencel, and Sarah Ziegenhorn for helping to coordinate various aspects of review, production, and publication.

Reliable digital health data represent the foundational elements of a continuously learning health system. The discussions summarized in this workshop explore the potential and challenges for utilizing these data for learning and outline potential strategies and actions to catalyze progress.

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

We believe Digital Data Improvement Priorities for Continuous Learning in Health and Health Care will be a valuable resource as efforts to build and leverage the digital health data utility continue to move forward.

James Walker, Chair
Planning Committee on
Digital Data Priorities for Continuous Learning
Chief Health Information Officer
Geisinger Health System

J. Michael McGinnis
Senior Scholar
Executive Director
Roundtable on Value & Science-Driven Health Care
Institute of Medicine

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×

This page is blank

Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R1
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R2
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R3
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R4
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R5
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R6
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R7
Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R8
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R9
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R10
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R11
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R12
Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R13
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R14
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R15
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R16
Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R17
Page xviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2013. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/13424.
×
Page R18
Next: 1 Introduction »
Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary Get This Book
×
Buy Paperback | $35.00 Buy Ebook | $28.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

Digital health data are the lifeblood of a continuous learning health system. A steady flow of reliable data is necessary to coordinate and monitor patient care, analyze and improve systems of care, conduct research to develop new products and approaches, assess the effectiveness of medical interventions, and advance population health. The totality of available health data is a crucial resource that should be considered an invaluable public asset in the pursuit of better care, improved health, and lower health care costs.

The ability to collect, share, and use digital health data is rapidly evolving. Increasing adoption of electronic health records (EHRs) is being driven by the implementation of the Health Information Technology for Economic and Clinical Health (HITECH) Act, which pays hospitals and individuals incentives if they can demonstrate that they use basic EHRs in 2011. Only a third had access to the basic features necessary to leverage this information for improvement, such as the ability to view laboratory results, maintain problem lists, or manage prescription ordering.

In addition to increased data collection, more organizations are sharing digital health data. Data collected to meet federal reporting requirements or for administrative purposes are becoming more accessible. Efforts such as Health.Data.gov provide access to government datasets for the development of insights and software applications with the goal of improving health. Within the private sector, at least one pharmaceutical company is actively exploring release of some of its clinical trial data for research by others. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary summarizes discussions at the March 2012 Institute of Medicine (2012) workshop to identify and characterize the current deficiencies in the reliability, availability, and usability of digital health data and consider strategies, priorities, and responsibilities to address such deficiencies.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!