Health Data in the Information Age

Use, Disclosure, and Privacy

Molla S. Donaldson and Kathleen N. Lohr, Editors

Committee on Regional Health Data Networks

Division of Health Care Services

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.
1994



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--> Health Data in the Information Age Use, Disclosure, and Privacy Molla S. Donaldson and Kathleen N. Lohr, Editors Committee on Regional Health Data Networks Division of Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1994

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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 this report were chosen for their special competencies and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine Support for this project was provided by the John A. Hartford Foundation, the American Health Information Management Association, Electronic Data Systems Corporation, and Science Applications International Corporation. Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on Regional Health Data Networks. Health data in the information age : use, disclosure, and privacy / Molla S. Donaldson and Kathleen N. Lohr, editors ; Committee on Regional Health Data Networks, Division of Health Care Services, Institute of Medicine. p. cm. Includes bibliographical references and index. ISBN 0-309-04995-4 1. Medical records—Access control. 2. Confidential communications—Physicians. 3. Medical informatics. I. Donaldson, Molla S. II. Lohr, Kathleen N., 1941- . III. Title. RA976.148 1994 651.5′04261—dc20 94-2613 CIP Copyright 1994 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 image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemuseen in Berlin. Cover art: Woodcut of Galen, flanked by Hippocrates and Avicenna. Source: Galen, Opera, Lyon, 1528, vignette on title page. Courtesy of National Library of Medicine, Bethesda, Maryland.

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--> COMMITTEE ON REGIONAL HEALTH DATA NETWORKS ROGER J. BULGER,* Chair, President and CEO, Association of Academic Health Centers, Washington, DC ROBERT H. BROOK,* Professor of Medicine and Public Health, UCLA Center for Health Sciences, and Director, Health Sciences Program, The RAND Corporation, Santa Monica, California ELLIOTT S. FISHER, Director, Outcomes Group, Veterans Affairs Hospital, White River Junction, Vermont, and Associate Professor of Medicine and Community and Family Medicine, Center for the Evaluative Clinical Sciences, Dartmouth Medical School, Hanover, New Hampshire SPENCER FOREMAN, President, Montefiore Medical Center, Bronx, New York JANLORI GOLDMAN,† Director, Project on Privacy and Technology, American Civil Liberties Union, Washington, DC CLARK E. KERR, Vice President, Government Relations, Bank of America, San Francisco, California JOHN W. KIRKLIN,* Professor, Department of Surgery, School of Medicine and Medical Center, University of Alabama Medical Center, Birmingham, Alabama ANTHONY M. KOTIN, National Medical Director for Marketing and Specialty Products, National Medical Quality Officer, The Travelers Companies, Chicago, Illinois ROBERT M. KRUGHOFF, President, Center for Study of Services, Washington, DC RENE LERER, Senior Vice President for Corporate Development, Value Health Sciences, Santa Monica, California ELENA O. NIGHTINGALE,* Senior Program Officer and Special Advisor to the President of the Carnegie Corporation of New York, Washington, DC MADISON POWERS, Senior Research Scholar, Kennedy Institute of Ethics, Georgetown University, Washington, DC EDWARD H. SHORTLIFFE,* Chief, Division of General Internal Medicine, Associate Chair for Primary Care, Department of Medicine, Stanford University School of Medicine, Stanford, California ELLIOT M. STONE, Executive Director, Massachusetts Health Data Consortium, Inc., Waltham, Massachusetts ADELE A. WALLER, Partner, Gardner, Carton & Douglas, Chicago, Illinois WILLIS H. WARE,‡ Corporate Research Staff, The RAND Corporation, Santa Monica, California

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--> Study Staff, Division of Health Care Services Karl D. Yordy, Director (until 10/1/93) Kathleen N. Lohr, Director (as of 10/1/93), Study Director Molla S. Donaldson, Study Director Helen C. Rogers, Project Assistant *   Member, Institute of Medicine †   Served through June 23, 1993 ‡   Member, National Academy of Engineering

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--> Preface From the very first meetings, in the early 1970s, of the newly constituted Institute of Medicine (IOM) of the National Academy of Sciences, a major objective has been the engagement of the most important and difficult health and science policy issues from the public's or society's perspective. The Institute was created so that a broad-based and multidisciplinary membership could work across professions, within and without the health sciences, toward the solution of these complex and difficult problems. From my personal experience as a staff member at the IOM during the first four years of its life, I can attest to the early recognition of the importance of the process of having a balanced, multidisciplinary committee working on the policy issues at hand. The assumption was that the sum of the parts of such a diverse group was surpassed by the synergy of the whole; more often than not, this positive learning experience also produced a useful document or report. In my personal experience with such groups, I cannot recall a failure either in the product and its value or in the process and its impact on the individuals participating. I must say, however, that the challenges facing this committee on regional databases were so great and our initial difficulties so intense in becoming clear about and comfortable with the seminal questions embedded in our charge that I was not optimistic about either our two-year experience together or the product that I could envision emerging. Our challenges were formidable because the very nature of the "regional databases" was obscure to some, their potentials for good or harm

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--> were obscure to others, and the interweaving of such heavy strands of legal material with information technology, data management, security maintenance, and the substance of health services research made it exceedingly hard for many of us to get comfortable with our view and understanding of the completed policy tapestry. But we did it! Never have I been on a committee with the dogged determination of this one; our relatively large committee seldom had a meeting wherein even one, let alone more than one, member was absent, and they stayed to the end. Never have I been on a committee wherein the doctors, scientists, data experts, lawyers, representatives of the public interest, and experts from the business world had such great expertise, such strong opinions, and such diverse perspectives. The key to the success of this project, it seems to me, was the gradual emergence of a commonality in shared values. Somewhat to our collective surprise, we found ourselves unanimous in our acceptance of the following fundamental assumptions: (1) use of population-wide databases developed from individually collected, computerized personal health data has become a working reality; (2) potential benefits of such data sets used for financial, organizational, quality improvement, and research purposes to society are indeed great; (3) protection of the individual record from person-identifiable exposure must involve all possible behavioral, systematic, and technical security measures; (4) relevant data sets and analyses including hospital-, clinic-, and provider-specific data must be expeditiously made available to the public; and (5) bona fide researchers must have access to person-identifiable records in order to provide society with timely studies on health status and health care. These five foundational elements were essential to the committee's collective thinking and its observations, conclusions, and recommendations as detailed in the report. Once the committee came together around these ideas, it was able to move systematically through the myriad of policy implications that come from reasoning from basic principles. This could not have been accomplished without the indomitable persistence and prodigious intellectual work of Molla Donaldson and Kathleen Lohr. Karl Yordy made key contributions intermittently as was appropriate for an IOM division head. Finally, it has become increasingly obvious to me (and I believe to the rest of the committee) that the future we see emerging before us, as a result of our participation in this study, has heavy implications for public education. In a way, developing an informed and sophisticated public is what regional databases and their analyses and reports are all about. The burden of these education efforts may fall primarily upon health database organizations, but in my view this responsibility belongs to all interested parties,

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institutions, and professions. The purpose of these new information technologies is to enhance the health status of society and to improve health care for the individual patient. We hope and trust that this report itself will contribute to public understanding of these complex but important matters. ROGER J. BULGER, M.D., F.A.C.P. Chair

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--> Acknowledgments The Committee on Regional Health Data Networks wishes to acknowledge the assistance that they and the study staff received from many individuals and organizations during this study. Among these are a large number of individuals and organizations who met with members of the committee and staff during site visits and provided valuable insight into both the benefits to be gained and the obstacles to current efforts to establish and operate various kinds of health database organizations and regional networks. The committee benefited from presentations by guests invited to three of its meetings. In March 1992 John P. Fanning, LL.B., Office of Health Policy and Evaluation, Office of the Assistant Secretary of Health, Department of Health and Human Services, spoke to the committee about privacy issues related to the disclosure of data from various kinds of databases. Lance J. Hoffman, Ph.D., Professor, Department of Electrical Engineering and Computer Science, George Washington University, gave an evening presentation on issues of security and inferential identification. In June 1992 the committee was joined by H. Jefferson Smith, Ph.D., of Georgetown University School of Business Administration; William Goss of the Health Care Management Program at General Electric; Robin Stults, R.R.A., of the University of Maryland Medical System; and Edward J. Hinman, M.D., of Lincoln National. All these participants discussed current practices in the use and protection of health information from their various perspectives (employers, providers, computer security experts, and insurers and third-party payers). Bert Tobin of Benton International also presented a working

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--> model of an information repository. At both this meeting and the next meeting in October 1992, Robert Belair, J.D., explored with the committee a range of legal and regulatory aspects of privacy and confidentiality. At the October meeting, the committee also heard from John Baker, Senior Vice President of Equifax, Inc., in Atlanta, Georgia, regarding the issues of privacy, confidentiality, and access in other databases. The committee also wishes to acknowledge the organizations, institutions, and groups, listed in Appendix A, that participated in its five site visits. A considerable debt of gratitude is owed to the many individuals, too numerous to name here, who because of their association with those organizations gave the committee valuable insights into the many issues of use, disclosure, and privacy that make up the heart of the committee's report. The study would not have been possible without the support of the John A. Hartford Foundation, and the consistent and enthusiastic encouragement from Richard Sharpe, the Foundation's Program Officer, is hereby acknowledged. Generous assistance was also provided by the American Health Information Management Association, Electronic Data Systems Corporation, and Science Applications International Corporation. This study benefited from both previous and current IOM studies, including work by the Committee on Improving the Patient Record in Response to Increasing Functional Requirements and Technological Advances, the Committee on Employer-based Health Benefits, and the Committee on Assessing Genetic Risks. The committee is particularly appreciative of the assistance from Marilyn J. Field, Ph.D., and Jane Fullarton, M.P.H., the project directors for the latter two studies, who provided cogent presentations on privacy and confidentiality matters at one committee meeting. Finally, and in particular, the committee would like to express its gratitude to the IOM staff who facilitated the work of the committee. We are grateful for the secretarial and logistical support provided by Helen Rogers and Donald Tiller and for the assistance during the report review and preparation stage of Claudia Carl and Michael Edington of the IOM's Office of Reports and Information; the steady help of Nina Spruill, Financial Associate for the Division of Health Care Services, was also greatly appreciated. Krys Krystynak, while a participant in the federal 1992 SES Candidate Development Program, spent some time at the IOM assisting on the study. Finally, the committee acknowledges its considerable debt to Karl Yordy, Director of the Division of Health Care Services through September 1993, for his unflagging guidance and support during this project.

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--> Contents     SUMMARY   1 1   INTRODUCTION   27     Advancing the Prospects for Comprehensive Health Databases and Networks   29     Health Database Organizations   32     The Institute of Medicine Study   33     Study Activities   38     Organization of the Report   38     Comment   39 2   HEALTH DATABASES AND HEALTH DATABASE ORGANIZATIONS: USES, BENEFITS, AND CONCERNS   40     Definitions   42     The Benefits of Health Databases   61     Users of Information in HDOs   63     Uses of Databases   65     Ensuring the Quality of Data   85     Summary   89 3   PUBLIC DISCLOSURE OF DATA ON HEALTH CARE PROVIDERS AND PRACTITIONERS   91     Previous Studies   93

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-->     Important Principles of Public Disclosure   95     Important Elements of Public Disclosure   96     Committee Findings and Conclusions   105     Recommendations   106     Strengthening Quality Assurance and Quality Improvement Programs   116     Summary   121     Appendix 3A   123 4   CONFIDENTIALITY AND PRIVACY OF PERSONAL DATA   136     Historical Perspectives and General Observations on Disclosure of Information   136     Sources of Concerns about Privacy and the Confidentiality of Health Records   140     Definitions   142     Expanded Definitions   154     Harm from Disclosure and Redisclosure of Health Record Information   156     Privacy Interests and HDOs   162     Relevance of Existing Laws to HDOs   172     Options for Protecting Privacy and Confidentiality of Health-related Data in HDOs   179     Committee Recommendations   190     Comment   209     Summary   212     REFERENCES   214     APPENDIXES   225     AFACT-FINDING FOR THE COMMITTEE ON REGIONAL HEALTH DATA NETWORKS   227     BCOMMITTEE ON REGIONAL HEALTH DATA NETWORKS BIOGRAPHICAL SKETCHES   232     GLOSSARY   239     ACRONYMS   244     INDEX   247

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