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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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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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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
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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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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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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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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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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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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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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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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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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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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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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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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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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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