COMPUTATIONAL TECHNOLOGY FOR EFFECTIVE HEALTH CARE

IMMEDIATE STEPS AND STRATEGIC DIRECTIONS

William W. Stead and Herbert S. Lin, Editors

Committee on Engaging the Computer Science Research Community in Health Care Informatics

Computer Science and Telecommunications Board

Division on Engineering and Physical Sciences

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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Comput tional a teChnology for effeCtive health Care i mmediat e St e pS a n d St r at e giC direCtion S William W. Stead and Herbert S. Lin, Editors Committee on Engaging the Computer Science Research Community in Health Care Informatics Computer Science and Telecommunications Board Division on Engineering and Physical Sciences

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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 Gov- erning Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engi- neering, 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. Support for this project was provided by the National Library of Medicine and the National Institute of Biomedical Imaging and Bioengineering, National Insti- tutes of Health (Award Number N01-OD-04-2139, Task Order 182); the National Science Foundation (Award Number CNS-0638373); the Vanderbilt University Medical Center; Partners HealthCare System; the Robert Wood Johnson Foun- dation (Award Number 59392); and the Commonwealth Fund (Award Number 20070083). Any opinions expressed in this material are those of the authors and do not necessarily reflect the views of the agencies and organizations that provided support for the project. International Standard Book Number 13: 978-0-309-13050-9 International Standard Book Number 10: 0-309-13050-6 Library of Congress Control Number: 2009921035 Copies of this report are available from: The National Academies Press 500 Fifth Street, N.W., Lockbox 285 Washington, DC 20055 800/624-6242 202/334-3313 (in the Washington metropolitan area) http://www.nap.edu Copyright 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America

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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 govern- ment 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 char- ter of the National Academy of Sciences, as a parallel organization of outstand- ing 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 pro- viding 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

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COMMITTEE ON ENGAGING THE COMPUTER SCIENCE RESEARCH COMMUNITY IN HEALTH CARE INFORMATICS WILLIAM W. STEAD, Vanderbilt University, Chair G. OCTO BARNETT, Massachusetts General Hospital SUSAN B. DAVIDSON, University of Pennsylvania ERIC DISHMAN, Intel Corporation DEBORAH L. ESTRIN, University of California, Los Angeles ALON HALEVY, Google, Inc. DONALD A. NORMAN, Northwestern University IDA SIM, University of California, San Francisco School of Medicine ALFRED Z. SPECTOR, Google, Inc. PETER SZOLOVITS, Massachusetts Institute of Technology ANDRIES VAN DAM, Brown University GIO WIEDERHOLD, Stanford University Staff HERBERT S. LIN, Study Director (and Chief Scientist, CSTB) DAVID PADGHAM, Associate Program Officer (through May 2008) ERIC WHITAKER, Senior Program Assistant (from May 2008) JANICE M. SABUDA, Senior Program Assistant (through March 2008) 

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COMPUTER SCIENCE AND TELECOMMUNICATIONS BOARD JOSEPH F. TRAUB, Columbia University, Chair ERIC BENHAMOU, Benhamou Global Ventures, LLC FREDERICK R. CHANG, University of Texas, Austin WILLIAM DALLY, Stanford University MARK E. DEAN, IBM Almaden Research Center DEBORAH L. ESTRIN, University of California, Los Angeles JOAN FEIGENBAUM, Yale University KEVIN KAHN, Intel Corporation JAMES KAJIYA, Microsoft Corporation MICHAEL KATZ, University of California, Berkeley RANDY H. KATZ, University of California, Berkeley SARA KIESLER, Carnegie Mellon University TERESA H. MENG, Stanford University PRABHAKAR RAGHAVAN, Yahoo! Research FRED B. SCHNEIDER, Cornell University DAVID E. SHAW, D.E. Shaw Research and Columbia University ALFRED Z. SPECTOR, Google, Inc. WILLIAM W. STEAD, Vanderbilt University ANDREW J. VITERBI, Viterbi Group, LLC PETER WEINBERGER, Google, Inc. Staff JON EISENBERG, Director RENEE HAWKINS, Financial Associate HERBERT S. LIN, Chief Scientist, CSTB LYNETTE I. MILLETT, Senior Program Officer MORGAN MOTTO, Senior Program Assistant ERIC WHITAKER, Senior Program Assistant For more information on CSTB, see its Web site at http://www.cstb. org, write to CSTB, National Research Council, 500 Fifth Street, N.W., Washington, DC 20001, call (202) 334-2605, or e-mail the CSTB at cstb@ nas.edu. i

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Preface It is essentially axiomatic that modern health care is an information- and knowledge-intensive enterprise.1 The information collected in health care includes—among other things—medical records of individual patients (both paper and electronic, spread across many different health care organizations), laboratory test results, information about treatment protocols and drug interactions, and a variety of financial and administra- tive information. Knowledge resides in the published medical literature, in the higher-order cognitive processes of individual clinicians and care providers, and in the processes of health care organizations that facilitate the provision of care. Whereas the practices of 20th century health care were based largely on paper, there is now a broad consensus that realizing an improved 21st century vision of health care will require intensive use of informa- tion technology to acquire, manage, analyze, and disseminate health care information and knowledge. Accordingly, the Administration and Con- gress have been moving to encourage the adoption, connectivity, and interoperability of health care information technology. President George W. Bush called for nationwide use of electronic medical records by 2014,2 1Institute of Medicine and National Academy of Engineering, Building a Better Deliery Sys- tem: A New Engineering/Health Care Partnership, The National Academies Press, Washington, D.C., 2005, available at http://www.nap.edu/catalog.php?record_id=11378. Commission on Systemic Interoperability, Ending the Document Game, U.S. Government Printing Office, Washington, D.C., 2005, available at http://endingthedocumentgame. gov/. ii

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iii PREFACE and the Department of Health and Human Services (HHS) is involved in various aspects of achieving this goal.3 The National Library of Medicine launched this study to support the engagement of individuals from the computer science research commu- nity in meeting two challenges posed by health care information technol- ogy: identifying how today’s computer science-based methodologies and approaches might be applied more effectively to health care, and explicat- ing how the limitations in these methodologies and approaches might be overcome through additional research and development. The study described in this report was conducted by an interdisci- plinary committee of experts in biomedical informatics, computer science and information technology (including databases, security, networking, human-computer interaction, and large-scale system deployments), and health care providers (e.g., physicians who have worked with information technologies). Appendix A provides brief biographical information on the members and the staff of the Committee on Engaging the Computer Sci- ence Research Community in Health Care Informatics. The committee’s work focused primarily on understanding the nature and impact of the information technology investments made by major health care organizations. By design, the committee’s effort was both time- and resource-limited, and thus the primary function of this report is to lay the groundwork for future efforts that can explore in a second phase some of the identified questions and issues in greater detail. Perhaps most importantly, this study does not touch, except in the most peripheral way, on a myriad of complex social, political, and economic issues that compli- cate the task of health care reform. For example, although this report emphasizes the role of the clini- cian, there are other important decision makers in the health care system, including patients, family caregivers, and other health care professionals, whose health care information technology needs the report addresses only peripherally. Similarly, although the data-gathering efforts of the committee were focused primarily on major health care organizations, the majority of health care is delivered in small-practice settings (of two to five physicians) that lack significant organizational support. These omissions do not diminish the significance of the committee’s efforts and recommendations, although they do point to the need for more work to understand health care information technology (IT) needs more thor- oughly in the areas that the committee did not examine carefully. 3Instituteof Medicine, Opportunities for Coordination and Clarity to Adance the National Health Information Agenda, The National Academies Press, Washington, D.C., 2007, available at http://www.nap.edu/catalog.php?record_id=12048.

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ix PREFACE Other important issues omitted in this report that are worthy of seri- ous attention in follow-on reports include the explicit inclusion of instruc- tion in health/biomedical informatics and health care IT in various forms of health care education (e.g., medical and nursing school curricula); legal and cultural barriers to sharing information among various care provid- ers; the development of a strategic plan or roadmap that articulates the strengths, weaknesses, opportunities, and threats to the development of health care IT; standards-development processes in the health care IT industry that might facilitate interoperability; and issues related to personal health records for use by patients, the relationship of education in computer science to health care and biomedical informatics (and vice versa), and organizational support for health care providers that operate on a small scale. The evidentiary basis for this study involved several threads. The primary observational evidence was derived from committee site visits to eight medical centers around the country (Appendix B provides the agen- das for the site visits that the committee conducted). Obviously, a com- prehensive view of the current state of the art in the nation’s health care information technology cannot be derived from eight site visits—thus, the organizations visited must be regarded as a sampling of the state of practice throughout the country. Care was taken to ensure that the site visits were to medical centers that varied along important dimensions: governance and ownership (government-operated, non-profit, for-profit), academic and community, and in-house technology development and vendor-supplied technology. The centers visited shared one character- istic—for the most part, they were widely acknowledged to be leaders in the use of IT for health care. This choice was made because the com- mittee felt that many of the important innovations and achievements for health care IT would be found in organizations thought to be leaders in the field. The findings from the site visits are presented in Appendix C as a table of observations, consequences, and opportunities for action. The observations are de-identified generalizations of detail from multiple sites. The consequences and opportunities for action reflect the commit- tee’s judgment. In the main text of the committee’s report, observations from site visits are cross-referenced where appropriate with the notation CxOy. Cx refers to Category x of the committee’s observations as grouped in Table C.1 (which lists six categories of observations), and Oy refers to a particular observation as numbered in Table C.1 (which includes a total of 25 observations).

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x PREFACE The findings from the site visits were combined with other eviden- tiary threads: • Preious work of the Institute of Medicine (IOM) and the National Academy of Engineering. Rather than starting from scratch, the committee adopted as a point of departure for its work the IOM series “Crossing the Quality Chasm”—a vision of 21st century health care that is safe, effective, patient-centered, timely, efficient, and equitable. • Selectie literature reiew. In many instances in this report, a claim is made that is based not on direct observation but rather on one or more papers in the scientific literature. • Committee expertise. The committee included a number of indi- viduals with substantial clinical and business expertise in medical centers similar to those visited by the committee and other similar settings. Expe- riences from these individuals were added to this report as needed. Eight site visits cannot support development of a statistically sig- nificant set of examples and illustrations—nevertheless, the committee believes that its observations and conclusions meet the more important test of substantive significance, especially since they arose as a result of visits to organizations regarded as among the best in the country in apply- ing IT to solve health care problems. Finally, although the committee’s charge (Box P.1) calls attention to the computer science research community, the health/biomedical infor- matics research community is also a key player for doing the necessary research. The field of health/biomedical informatics emerged from medi- cal informatics, which was described in 1990 by Greenes and Shortliffe as “the field that concerns itself with the cognitive, information processing, and communication tasks of medical practice, education, and research, including the information science and the technology to support these tasks.”4 “Health informatics” and “biomedical informatics” are more recent terms that acknowledge the increasing importance of informatics for aspects of health beyond medicine and for the basic biological sciences in medicine. Computer science as a discipline does not subsume health/biomedical informatics, although computer scientists can and do make major contri- butions to that field. Health/biomedical informatics is more than medical computer science, drawing also on the decision, cognitive, and informa- tion sciences as well as engineering, organizational theory, and sociology 4Robert Greenes and Edward H. Shortliffe, “Medical Informatics: An Emerging Academic Discipline and Institutional Priority,” Journal of the American Medical Association 263(8):1114- 1120, 1990.

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xi PREFACE Box P.1 Study Statement of Task The Computer Science and Telecommunications Board will conduct a 2- phase study to examine information technology (IT) problems faced by the health care system in realizing the emerging vision of patient-centered, evidence-based, efficient health care using electronic health records and other IT. The study will focus on the foundation issue of the electronic health record. In phase 1, the committee will conduct a series of site visits to a variety of health care delivery sites. A short (roughly 5000 word) phase 1 report, based largely on the site visits, will assess the match between today’s health information systems and current plans for using electronic health records nationwide, identify important information management problems that could be solved relatively eas- ily and inexpensively (i.e., where short payback periods and quick improvements would be possible) by today’s technologies, provide (non-comprehensive) illustra- tions of how today’s knowledge about computer science and IT could be used to provide immediate short-term benefits to the health care system, and lay out im- portant questions that future reports (from this or other studies) should address. In phase 2, the committee will prepare a phase 2 report identifying technical areas where additional computer science and IT research is needed to further advance the state of the art of health care IT; priorities for research that will yield significantly increased medical effectiveness or reduced costs; information man- agement problems whose solutions require new practices and policies; and public policy questions that need to be resolved to allow such research to proceed. Both reports are intended to identify technical solutions to advance health care IT, to expose the information technology and computer science research communities to important technical problems, and to provide a foundation for other studies related to health care informatics. with a health and biomedical emphasis that is largely lacking in the world of computer science research. In the context of this report, specialists in health/biomedical informatics can serve a bridging function between the computer science community and the world of biomedicine with which computer science researchers are largely unfamiliar. The committee thanks the National Library of Medicine, the National Institute of Biomedical Imaging and Bioengineering, the National Science Foundation, the Vanderbilt University Medical Center, Partners Health- Care System, the Robert Wood Johnson Foundation, and the Common- wealth Fund for the financial support needed to conduct this study. For providing information and hosting site visits for the commit- tee, the committee expresses its appreciation to a number of organiza- tions: Partners HealthCare (David Bates, Henry Chueh, Anuj Dalal, John Glaser, and Jeff Schnipper), the University of Pittsburgh Medical Cen- ter (Jocelyn Benes, Jody Cervenak, Jacque Dailey, Steven Docimo, Tom

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xii PREFACE Dongilli, William Fera, Kim Gracey, Robert Kormos, James Levin, Daniel Martich, Ed McCallister, Tami Merryman, Sean O’Rourke, Vivek Reddy, Paul Sikora, Michele Steimer, and Jeff Szymanski), HCA Tristar (David Archer, Darryl Campbell, Kimberly Lewis, Annette Matlock, Jon Perlin, Melody Rose, Ruth Westcott, and Kelly Wood), Intermountain Healthcare (Lynn Elstein, Stan Huff, Marc Probst, and Brent Wallace), the Palo Alto Medical Foundation (Albert Chan, Steve Hansen, Neil Knutsen, Charlotte Mitchell, Tomas Moran, Gil Radtke, and Paul Tang), the University of California, San Francisco (Sharon Friend, Gail Harden, Michael Kamerick, Jon Showstack, and Deborah Yano-Fong), Vanderbilt University Medi- cal Center (Rashid M. Ahmad, John Doulis, Mark Frisse, David Greg- ory, Ken Holroyd, Sara Hutchison, Marsha Kedigh, Randy Miller, Neal Patel, Corey Slovis, and Jack Starmer), San Francisco General Hospital (Geoff Manley), and the Department of Veterans Affairs (Stanlie Daniels, Neil Eldridge, Neil Evans, Ross Fletcher, Raya Kheirbek, Tracie Loving, Joaquin Martinez, Linwood Moore, Fernando O. Rivera, and Kenneth Steadman). A number of individuals also briefed the committee during open ses- sions: B. Alton Brantley (principal, the CCI Group), Kenneth D. Mandl (Harvard Medical School and Harvard-MIT Division of Health Sciences and Technology), Greg Walton (HIMSS Analytics), Denis Cortese (Mayo Clinic), Peter Neupert (Microsoft), Scott Wallace (National Coalition for Health Care IT), Janet Corrigan (National Quality Forum), Alicia A. Brad- ford (Office of the National Coordinator for Health Information Tech- nology), Peter J. Fabri (University of South Florida and Northwestern University), and Gina Grumke and Monique Lambert (Intel). Betsy Hum- phreys and Donald A.B. Lindberg from the National Library of Medicine provided the charge to the committee at its first meeting. The committee also appreciates the efforts of David Padgham, associ- ate program officer, who left the National Research Council in May 2008, in organizing these site visits and other information-gathering sessions of the committee. Finally, the committee thanks Herbert Lin, study direc- tor and chief scientist of the Computer Science and Telecommunications Board, for his counsel throughout the project and his effort in developing the report.

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Acknowledgment of 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 pub- lished 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: Gregory D. Abowd, Georgia Institute of Technology, Alton Brantley, Cardinal Consulting, Inc., Janet Corrigan, National Quality Forum, Peter J. Fabri, University of South Florida College of Medicine, Chuck Geschke, Adobe Systems, Sara Kiesler, Carnegie Mellon University, Isaac Kohane, Harvard University, Prasenjit Mitra, Pennsylvania State University, Peter Neupert, Microsoft Corporation, Ted Shortliffe, University of Arizona College of Medicine, Phoenix, and Lee Sproull, New York University. xiii

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xi ACKNOWLEDGMENT OF REVIEWERS Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the con- clusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by David G. Hoel of the Medical University of South Carolina and Victor Vyssotsky. Appointed by the National Research Council, they were responsible for making certain that an independent examination of this report was car- ried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final con- tent of this report rests entirely with the authoring committee and the institution.

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Contents SUMMARY 1 1 HEALTH CARE IN THE UNITED STATES TODAY 13 1.1 The Tasks and Workflow of Health Care, 14 1.2 The Institution and Economics of Health Care, 15 1.3 Current Implementations of Health Care Information Technology, 17 1.4 Trends, 17 1.5 The Structure of This Report, 18 2 A VISION FOR 21st CENTURY HEALTH CARE 19 AND WELLNESS 3 CROSSING THE HEALTH CARE IT CHASM 25 4 PRINCIPLES FOR SUCCESS 30 4.1 Evolutionary Change, 31 4.1.1 Principle 1: Focus on Improvements in Care— Technology Is Secondary, 31 4.1.2 Principle 2: Seek Incremental Gain from Incremental Effort, 32 4.1.3 Principle 3: Record Available Data So That They Can Be Used for Care, Process Improvement, and Research, 32 x

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xi CONTENTS 4.1.4 Principle 4: Design for Human and Organization Factors, 32 4.1.5 Principle 5: Support the Cognitive Functions of All Caregivers, Including Health Professionals, Patients, and Their Families, 33 4.2 Radical Change, 33 4.2.1 Principle 6: Architect Information and Workflow Systems to Accommodate Disruptive Change, 33 4.2.2 Principle 7: Archive Data for Subsequent Re-interpretation, 34 4.2.3 Principle 8: Seek and Develop Technologies That Identify and Eliminate Ineffective Work Processes, 34 4.2.4 Principle 9: Seek and Develop Technologies That Clarify the Context of Data, 35 5 RESEARCH CHALLENGES 36 5.1 An Overarching Research Grand Challenge: Patient-Centered Cognitive Support, 39 5.2 Other Representative Research Challenges, 45 5.2.1 Modeling, 45 5.2.2 Automation, 46 5.2.3 Data Sharing and Collaboration, 49 5.2.4 Data Management at Scale, 53 5.2.5 Automated Full Capture of Physician-Patient Interactions, 56 6 RECOMMENDATIONS 59 6.1 Government, 60 6.2 The Computer Science Community, 65 6.3 Health Care Organizations, 66 7 CONCLUDING THOUGHTS 68 APPENDIxES A Committee Members and Staff 71 B Meeting and Site Visit Agendas and Site Visit Methodology 80 C Observations, Consequences, and Opportunities: The Site 93 Visits of the Committee