Networking Health

Prescriptions for the Internet

Committee on Enhancing the Internet for Health Applications:
Technical Requirements and Implementation Strategies

Computer Science and Telecommunications Board
Commission on Physical Sciences, Mathematics, and Applications
National Research Council

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Networking Health Prescriptions for the Internet Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies Computer Science and Telecommunications Board Commission on Physical Sciences, Mathematics, and Applications National Research Council

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Page ii NATIONAL ACADEMY PRESS • 2101 Constitution Avenue, NW • Washington, DC 20418 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. Support for this project was provided by the National Library of Medicine under Task Order No. 42, Sponsor Award No. N01-OD-4-2139. Any opinions, findings, conclusions, or recommendations expressed in this material are those of the authors and do not necessarily reflect the views of the sponsor. Library of Congress Cataloging-in-Publication Data Networking health: prescriptions for the Internet / Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies, Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics, and Applications, National Research Council. p. cm. Includes bibliographical references and index. ISBN 0-309-06843-6 (casebound) 1. Internet (Computer network) in medicine. I. National Research Council (U.S.). Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies. R859.7.I58N48 2000 362.1'0285'4678—dc21                                                                                  00-008698 Additional copies of this report are available from: National Academy Press 2101 Constitution Avenue, NW Box 285 Washington, DC 20055 (800) 624-6242 (202) 334-3313 (in the Washington metropolitan area) http://www.nap.edu Copyright 2000 by the National Academy of Sciences. All rights reserved. Printed in the United States of Americabreak

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Page iii THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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. Bruce M. Alberts 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. William A. Wulf 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. Kenneth I. Shine 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. Bruce M. Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.break

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Prepublication Copy Subject to Further Editorial Correction [This page intentionally left blank] 1V

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Page v Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies EDWARD H. SHORTLIFFE, Columbia University, Chair RUSS BIAGIO ALTMAN, Stanford University PATRICIA FLATLEY BRENNAN, University of Wisconsin at Madison BRUCE DAVIE, Cisco Systems, Inc. WILLIAM M. DETMER, University of Virginia VALERIE FLORANCE, Association of American Medical Colleges ANDREW FRIEDE, Cerner Corp. MARK FRISSE, Express Scripts, Inc. JOHN GLASER, Partners Healthcare System, Inc. JOHN HUFFMAN, Stentor, Inc. ISAAC KOHANE, Children's Hospital, Boston CARL E. LANDWEHR, Mitretek Systems DANIEL R. MASYS, University of California at San Diego JANE E. SISK, Mount Sinai School of Medicine THORSTEN VON EICKEN, Cornell University Staff JERRY R. SHEEHAN, Study Director RITA GASKINS, Project Assistant MICKELLE RODGERS RODRIGUEZ, Senior Project Assistantbreak

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Page vi Computer Science and Telecommunications Board DAVID D. CLARK, Massachusetts Institute of Technology, Chair JAMES CHIDDIX, Time Warner Cable JOHN M. CIOFFI, Stanford University W. BRUCE CROFT, University of Massachusetts at Amherst SUSAN L. GRAHAM, University of California at Berkeley JUDITH HEMPEL, University of California at San Francisco JEFFREY M. JAFFE, Lucent Technologies, Inc. ANNA KARLIN, University of Washington BUTLER W. LAMPSON, Microsoft Corporation EDWARD D. LAZOWSKA, University of Washington DAVID LIDDLE, U.S. Venture Partners TOM M. MITCHELL, WhizBang! Labs, Inc. DONALD NORMAN, UNext.com RAYMOND OZZIE, Groove Networks DAVID A. PATTERSON, University of California at Berkeley CHARLES SIMONYI, Microsoft Corporation BURTON SMITH, Tera Computer Company TERRY SMITH, University of California at Santa Barbara LEE SPROULL, New York University Staff MARJORY S. BLUMENTHAL, Director HERBERT S. LIN, Senior Scientist JERRY R. SHEEHAN, Senior Program Officer ALAN S. INOUYE, Program Officer JON EISENBERG, Program Officer GAIL PRITCHARD, Program Officer JANET D. BRISCOE, Office Manager DANIEL LLATA, Senior Project Assistant SUZANNE OSSA, Senior Project Assistant MICKELLE RODGERS RODRIGUEZ, Senior Project Assistant DAVID DRAKE, Project Assistant MARGARET MARSH, Project Assistant BRANDYE WILLIAMS, Office Assistantbreak

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Page vii Commission on Physical Sciences, Mathematics, and Applications PETER M. BANKS, Veridian ERIM International, Inc., Co-chair W. CARL LINEBERGER, University of Colorado, Co-chair WILLIAM F. BALLHAUS, JR., Lockheed Martin Corporation SHIRLEY CHIANG, University of California at Davis MARSHALL H. COHEN, California Institute of Technology RONALD G. DOUGLAS, Texas A&M University SAMUEL H. FULLER, Analog Devices, Inc. JERRY P. GOLLUB, Haverford College MICHAEL F. GOODCHILD, University of California at Santa Barbara MARTHA P. HAYNES, Cornell University WESLEY T. HUNTRESS, JR., Carnegie Institution CAROL M. JANTZEN, Westinghouse Savannah River Company PAUL G. KAMINSKI, Technovation, Inc. KENNETH H. KELLER, University of Minnesota JOHN R. KREICK, Sanders, a Lockheed Martin Company (retired) MARSHA I. LESTER, University of Pennsylvania DUSA M. McDUFF, State University of New York at Stony Brook JANET NORWOOD, Former Commissioner, U.S. Bureau of Labor Statistics M. ELISABETH PATÉ-CORNELL, Stanford University NICHOLAS P. SAMIOS, Brookhaven National Laboratory ROBERT J. SPINRAD, Xerox PARC (retired) MYRON F. UMAN, Acting Executive Directorbreak

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Page ix Preface Considerable attention centers on the Internet and health care. The popular press tends to focus on the growing use of the Internet to support consumer health via health-related Web sites that provide information on specific diseases, contain guidance on healthy lifestyles, host chat and support groups, and sell a range of health-related products. Federal programs tend to focus on using networking of various kinds to support telemedicine, especially for rural and underserved areas. These applications represent just a small sampling of the ways the Internet can be used to support health and health care. Many other applications exist in public health, biomedical research, health care finance and administration, and the maintenance of electronic health records. Each of these applications demands different capabilities of its underlying networks, whether high-bandwidth connections, rapid delivery of data, tight security, reliability, or widespread access. As a result, the existing Internet cannot support them all. Nevertheless, a number of programs, such as the federal government's Next Generation Internet and the private-sector Internet 2 initiatives, are under way to enhance the capabilities of the Internet and to develop technologies that support high-performance networking. These programs could help the Internet meet the needs of the health and health care communities. But what capabilities must the Internet provide in order to support health and health care? How do they differ from those that might be developed anyway to support other applications of the Internet in sectors as diverse as commerce, entertainment, and defense?break

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Page x The Committee and Its Charge To obtain preliminary answers to these questions, the National Library of Medicine (NLM) asked the Computer Science and Telecommunications Board (CSTB) of the National Research Council (NRC) to conduct a study on the technical capabilities the Internet needs to support health applications and on ways of ensuring that these capabilities are implemented. The objectives were to (1) identify a range of health applications that could reasonably gain widespread, routine use over the Internet in the foreseeable future, (2) examine the technical capabilities these applications would demand, (3) define the characteristics of the Next Generation Internet and an associated infrastructure that would meet these requirements, and (4) recommend an appropriate strategy for achieving this infrastructure in light of other activities under way to enhance current Internet capabilities. The project was intended to address questions such as the following: • What characteristics of the current Internet limit its utility for various types of routine health and biomedical research uses? For different types of telemedicine? For plausible future health-related uses that will require high bandwidth? What would be the likely future levels of various types of health traffic on the network if these limitations were overcome? • What quality of service and security characteristics or tools will the Next Generation Internet require to be suitable for various types of health-related applications, given technical requirements and estimated traffic levels? Are the requirements of different health applications compatible with one another and with the requirements for other projected uses of the Internet? To what extent are they supported by technology available now or already in development? • What specific strategies are likely to ensure that the United States attains a communications infrastructure to support the full potential range of routine health and biomedical research uses? To conduct the study, CSTB assembled an expert committee consisting of 15 members drawn from the networking and health communities. The committee met five times between September 1998 and June 1999 to solicit testimony from outside experts, deliberate on its findings and recommendations, and draft its final report. It met again in September 1999 to discuss its plans for modifying the draft report in response to comments from many outside reviewers. The committee also conducted a series of site visits to gather information firsthand on the ways the Internet could be—and is being—used to support health and health care. Members of the committee visited with researchers and health practitioners atcontinue

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Page xi Stanford University, NASA Ames Research Center, the University of California at San Francisco, Kaiser-Permanente of Northern California, East Carolina University, the University of North Carolina at Chapel Hill, the University of Washington, Regence BlueShield, and the Washington State Department of Health. These visits provided an opportunity to directly observe Internet-based systems that had been developed for health care, biomedicine, and other health-related activities. It also provided an opportunity to learn more about the kinds of applications that cannot yet be implemented in an Internet-based system. The committee used the information gathered during site visits and presentations by other briefers to synthesize a comprehensive view of the ways the Internet could transform health-related activities. It attempted to identify the technical and nontechnical challenges that need to be overcome in order to expand the use of the Internet in health and biomedicine and to devise a set of recommendations that will help make the Internet a more useful communications medium within the health sector. The site visits are summarized in Appendix A. Specific material from the visits has been incorporated into Chapter 2 of this report. Acknowledgments This report benefited from the combined talents of many people, including those who were directly associated with the project and many who were not. First, thanks are due to members of the committee itself, all of whom maintained a high level of enthusiasm, energy, and dedication over the course of the project. Committee members found time for project meetings, site visits, and drafting portions of the text despite their many other responsibilities and commitments. Approximately half of the committee members changed jobs and/or affiliations as the project unfolded—a living testament to the dynamic nature of the Internet in health applications—yet they remained committed to this project throughout. Many other people volunteered their time and expertise to help the committee to better understand the ways in which the Internet might be used to support health objectives and the technical capabilities that health applications demand of the Internet. Special thanks are due to those who hosted, coordinated, and participated in its site visits and to those who met with the committee at its three open meetings (see Appendix D for a list of participants). The information gathered during these interactions proved invaluable to the committee's deliberations and forms the backbone of this report. Other people also provided useful information and advice to the committee. Mark Ellisman at the University of California at San Diego and Martin Hadida-Hassan at the San Diego Supercomputer Center helped to clarify the discussion of telemicroscopy in Chapter 2 ofcontinue

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Page xii this report; Stewart Streimer, John Parmigiani, and Sandy Haydock from the Health Care Financing Administration provided updates on the agency's security policy, pilot programs for electronic submission of data, and information technology strategy, respectively. Grant Miller and Yolanda Comedy, from the National Coordination Office for Computing, Information, and Communications, supplied information and funding data on the federal government's NGI initiative. Kenneth Birman at Cornell University contributed valuable insight into security and reliability concerns associated with use of the Internet in health applications. Donald Simborg described early efforts to network computers in health care organizations. The committee stands in awe of the remarkable, patient work of the CSTB and NRC staff in supporting its deliberations over the course of this study. Staff members kept the committee on track and helped its members to put their ideas and analyses into coherent prose. The committee is further indebted to the reviewers of an early draft of this report, whose thoughtful comments and criticisms challenged committee members to strengthen and refine their arguments—and to articulate them more clearly. This final report is considerably improved thanks to their input. It is a much more readable document thanks to Laura Ost, a free-lance editor who assisted the NRC's internal staff in editing the manuscript, and to James Igoe, from the National Research Council Library, who tracked down numerous references and helped to complete the citations in the reference lists. Finally, thanks are due to Donald A.B. Lindberg, director of the NLM, Michael Ackerman, assistant director for High Performance Computing at the NLM, and Betsy Humphreys, associate director for Library Operations at the NLM. Their dedication to improving health, health care, and biomedical research through Internet technologies and their financial support made this project possible. The committee hopes that its findings and recommendations will assist them in leading the health and the networking communities to achieve their vision of a ''healthier" Internet.break EDWARD H. SHORTLIFFE, CHAIR COMMITTEE ON ENHANCING THE INTERNET FOR HEALTH APPLICATIONS: TECHNICAL REQUIREMENTS AND IMPLEMENTATION STRATEGIES

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Page xiii Acknowledgment of Reviewers This report was reviewed by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the NRC's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the authors and the NRC in making the 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 contents of the review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their participation in the review of this report: Dixie Baker, Science Applications International Corporation, William Boebert, Sandia National Laboratories, James Bradley, Abaton.com, Inc., Scott Bradner, Harvard University, Charles Brownstein, Cross-Industry Working Team, Paul Clayton, Intermountain Health Care, Don Detmer, Cambridge University, Mary Fennell, Brown University, Thomas Ferrin, University of California at San Francisco, Alan Garber, Stanford University, John Halamka, CareGroup Healthcare System, Michael G. Kienzle, University of Iowa, Clement McDonald, Regenstrief Institute,break

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Page xiv Satyanarayanan Mahadev, Carnegie Mellon University, David Pryor, Allina Health System, Thomas Rindfleisch, Stanford University, Jay Sanders, Global Telemedicine Group, Elliot Stone, Massachusetts Health Data Consortium, Peter Szolovits, Massachusetts Institute of Technology, Elizabeth Ward, Foundation for Health Care Quality, and Betsy Weiner, University of Cincinnati. Although the individuals listed above provided many constructive comments and suggestions, responsibility for the final content of this report rests solely with the authoring committee and the NRC.break

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Page xv Contents Executive Summary 1 1 Overview and Introduction 27 A Systems Perspective 29 The Internet and Health 33 Drivers of Internet Applications in Health 35 Impediments to Broader Adoption of the Internet 36 Technical Considerations 38 Networking Alternatives 41 Enhancing the Internet 45 The Next Generation Internet Initiative 46 Private-Sector Efforts: Internet 2 and Abilene 50 Deploying Enhanced Internet Technologies 51 Organization of This Report 52 References 53 Notes 55 2 Health Applications of the Internet 57 Consumer Health 58 Consumer-Oriented Health Web Sites 59 E-mail Between Patients and Providers 62 Online Health Records 64 Patient Monitoring and Home Care 66 Technical Requirements for Consumer Health Applications 69

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Page xvi Clinical Care 71 Remote Consultation 72 Medical Imaging 76 Clinical Transactions 80 Technical Requirements for Clinical Care 87 Financial and Administrative Transactions 88 Technical Requirements for Financial and Administrative Applications 93 Public Health 94 Public Health Surveillance 96 Integrating Data Sources for Improved Decision Making 98 Responding to Bioterrorist Attacks 99 Technical Requirements for Public Health Applications 100 Professional Education 102 Graduate Education 102 Continuing Education 105 Technical Requirements for Health Professional Education 107 Biomedical Research 108 Biomedical Databases 109 Linked Simulations 112 Remote Control of Experimental Apparatus 113 Publication on the Internet 116 Collaboration Among Researchers 118 Clinical Research 120 Technical Requirements for Biomedical Research 121 Summary 123 Bandwidth 123 Latency 124 Availability 124 Security 124 Ubiquity 124 References 126 Notes 128 3 Technical Challenges 132 Quality of Service 133 Increasing Bandwidth 135 Differentiated Services 138 Integrated Services 140 Alternative Quality of Service Options 141 Quality of Service Policy 141 Multicast 143

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Page xvii Security 144 Elements of Security 145 Firewalls 148 Security Protocols 150 Access Controls 157 Network Availability 160 Broadband Technologies for the Local Loop 162 Privacy-Enhancing Technologies 167 Anonymous E-mail 169 Protected Web Browsing 170 Anonymous Payment 172 Anonymous Data Released from Sensitive Databases 172 Conclusion 173 Bibliography 174 Notes 176 4 Organizational Challenges to the Adoption of the Internet 178 Lessons from Other Industries 179 Advancing the Strategic Interests of Health Care 181 Impediments to Adopting Internet Applications 184 Barriers to Change 185 Uncertainties Surrounding Internet Strategies 189 Establishing Organizational Leadership for Information Technology 197 Summary 199 References 200 Notes 201 5 Issues for Public Policy 202 Protection of Personal Health Information 203 Access to Information Infrastructure 209 Intellectual Property Protection 215 Electronic Publishing 215 Distance Education 217 Regulations Affecting Electronic Delivery of Health Services 219 Payment Policies 219 Liability and Licensure 221 Federal Support for Health-Related Information Technology Research 223 Workforce Issues 227 Conclusion 230 References 230 Notes 232

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Page xviii 6 Conclusions and Recommendations 235 Conclusions 236 Recommendations 249 Research, Development, and Deployment of Needed Technical Capabilities 250 Demonstration and Evaluation of Health Applications of the Internet 257 Addressing Educational Needs 261 Addressing Policy Issues 263 A Final Word 265 References 266 Notes 268 Appendixes   A Site Visit Summaries 271 B National Library of Medicine Awards to Demonstrate Health Applications of the Next Generation Internet 314 C Biographies of Committee Members 334 D Individuals Who Participated in Site Visits or Briefed the Study Committee 342 Index 345

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