Identity Crisis: an Examination of the Costs and Benefits of a Unique
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This electronic representation of RAND intellectual property is provided for non-commercial use only. Unauthorized posting of RAND PDFs to a non-RAND Web site is prohibited. RAND PDFs are protected under copyright law. Permission is required from RAND to reproduce, or reuse in another form, any of our research documents for commercial use. For information on reprint and linking permissions, please see RAND Permissions. This product is part of the RAND Corporation monograph series. RAND monographs present major research findings that address the challenges facing the public and private sectors. All RAND monographs undergo rigorous peer review to ensure high standards for research quality and objectivity. IDENTITY CRISIS An Examination of the Costs and Benefits of a Unique Patient Identifier for the U.S. Health Care System Richard Hillestad, James H. Bigelow, Basit Chaudhry, Paul Dreyer, Michael D. Greenberg, Robin C. Meili, M. Susan Ridgely, Jeff Rothenberg, Roger Taylor Sponsored by Cerner Corporation, CPSI, Intel, IBM, Microsoft, MISYS, Oracle, and Siemens HEALTH The research described in this report was conducted within RAND Health, a unit of the RAND Corporation, and sponsored by a consortium of health information technology companies: Cerner Corporation, CPSI, Intel, IBM, Microsoft, MISYS, Oracle, and Siemens. The RAND Corporation is a nonprofit research organization providing objective analysis and effective solutions that address the challenges facing the public and private sectors around the world. RAND’s publications do not necessarily reflect the opinions of its research clients and sponsors. R® is a registered trademark. Cover design by Carol Earnest © Copyright 2008 RAND Corporation All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from RAND. Published 2008 by the RAND Corporation 1776 Main Street, P.O. Box 2138, Santa Monica, CA 90407-2138 1200 South Hayes Street, Arlington, VA 22202-5050 4570 Fifth Avenue, Suite 600, Pittsburgh, PA 15213-2665 RAND URL: http://www.rand.org To order RAND documents or to obtain additional information, contact Distribution Services: Telephone: (310) 451-7002; Fax: (310) 451-6915; Email: [email protected] Preface A national health information network, or NHIN, that enables disparate health care information systems across the United States to allow authorized users to easily and quickly share critical health information has the potential to enhance safety and dra- matically improve the quality and efficiency of the national health care system. A unique patient identifier (UPI) to use as a singular key to accurately link, file, and retrieve individual health records was seen as an important element of the national system and was mandated as part of the Health Insurance Portability and Account- ability Act of 1996 (HIPAA) legislation. However, privacy and security concerns about electronically sharing patient information have completely sidetracked the develop- ment of standards for a UPI and threaten to delay the development of the NHIN. This monograph examines the operational advantages and disadvantages, compares the errors, examines the costs, and discusses the privacy issues associated with the UPI and its alternatives. This monograph should be of interest to health care IT professionals, other health care executives and researchers, and officials in the government responsible for health policy. This research has been sponsored by grants from a generous consortium of health information technology companies: Cerner Corporation; CPSI; Intel; IBM; Microsoft; MISYS; Oracle; and Siemens. The right to publish results was retained by RAND. The research was conducted within RAND Health, a division of the RAND Corporation. A profile of RAND Health, abstracts of its publications, and ordering information can be found at www.rand.org/health. iii Contents Preface ................................................................................................. iii Figures .................................................................................................vii Tables .................................................................................................. ix Summary .............................................................................................. xi Abbreviations ........................................................................................ xxi CHAPTER ONE Introduction ........................................................................................... 1 Methods ................................................................................................. 2 Organization of the Monograph ..................................................................... 3 CHAPTER TWO The Primary Approaches for Identifying Patients and Linking Their Health Records ................................................................................... 5 Statistical Matching .................................................................................... 6 Unique Patient Identifier .............................................................................. 7 CHAPTER THREE Errors in Linking to Medical Records ..........................................................11 False-Positive Errors—Linking to the Wrong Patient’s Records ................................12 False-Negative Errors—Not Finding Some of a Patient’s Records ..............................15 CHAPTER FOUR Operational Issues ...................................................................................19 Disambiguation .......................................................................................19 Implementation ...................................................................................... 20 Architectural Flexibility ............................................................................ 22 Patients Who Do Not Have a UPI ................................................................ 22 Research and Public Health Considerations ...................................................... 23 v vi Identity Crisis: An Examination of the Costs and Benefits of a Unique Patient Identifier CHAPTER FIVE Privacy and Security of the Alternatives ........................................................25 Privacy and Security of the Primary Alternatives for Patient Identifiers .......................25 Legal Implications of the Two Main Methods of Patient-Identity Establishment ........... 26 CHAPTER SIX Costs....................................................................................................29 CHAPTER SEVEN The Policy and Political Environment for a National Patient Identifier ..................33 The Politics of Privacy and Security.................................................................33 Striving for Health Care Quality and Efficiency ................................................ 36 Integration with Existing Standards ............................................................... 40 CHAPTER EIGHT Conclusions and Implications .................................................................... 43 Conclusions ........................................................................................... 43 Broad Adoption of a UPI Should Enhance the U.S. Health Care System .................. 43 A Hybrid System Utilizing Both Statistical Matching and a UPI Will Be Necessary for the Foreseeable Future ....................................................... 43 Security and Privacy Could Be Strengthened with a UPI .................................... 43 Costs of a UPI Are Significant, but Probably Much Less Than the Value Associated with Error Reduction, Efficiency, and Interconnectivity of the Health Care System .......................................................................................... 44 Implications for Public Policy ...................................................................... 44 APPENDIX A. Analysis of False-Positive Errors in a Large Demographic Database .................47 B. Designs and Costs of Systems for Accessing Personal Health Information .........51 Bibliography ..........................................................................................65 Figures 3.1. Errors and Thresholds in Statistical Matching of Patients and Records ...........11 3.2. Chance of False Matches with Alternative Groups of Personal Attributes as Keys, for a Small Demographic Database .........................................13 3.3. Chance of False Matches with Alternative Groups