NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, D.C. 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.
The committee report and the commentaries were reviewed by groups 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.
See page xv for a listing of the organizations that supported the original and revised reports.
Library of Congress Cataloging-in-Publication Data
Institute of Medicine (U.S.). Committee on Improving the Patient Record.
The computer-based patient record : an essential technology for health care / Committee on Improving the Patient Record, Division of Health Care Services, Institute of Medicine ; Don E. Detmer, Elaine B. Steen, and Richard S. Dick, editors.—Rev. ed.
Includes bibliographical references and index.
1. Medical records—Data processing. I. Detmer, Don E. II. Steen, Elaine B. III. Dick, Richard S. IV. Title
[DNLM: 1. Medical Records. 2. Medical Records Systems, Computerized—organization & administration. 3. Delivery of Health Care, Integrated—organization & administration. WX 173 159c 1997]
for Library of Congress 97-31030
Copyright 1997 by the National Academy of Sciences
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 logo-type by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
Committee on Improving the Patient Record in Response to Increasing Functional Requirements and Technological Advances
DON E. DETMER (Chair),* Professor of Surgery and Business Administration and Vice President for Health Sciences,
University of Virginia, Charlottesville
MARION J. BALL, Associate Vice President for Information Resources,
University of Maryland, Baltimore
G. OCTO BARNETT,* Professor of Medicine,
Harvard Medical School,
Laboratory of Computer Science, Massachusetts General Hospital, Boston
DONALD M. BERWICK, Associate Professor of Pediatrics,
Harvard Medical School, Boston, Massachusetts
MORRIS F. COLLEN,* Director Emeritus and Consultant,
Division of Research, Kaiser Permanente Medical Care Program, Oakland, California
NICHOLAS E. DAVIES,† Practitioner of Internal Medicine,
RUTH E. GARRY, Senior Manager,
Group Benefits Services Division, CNA Insurance Companies, Chicago, Illinois
THOMAS Q. MORRIS, Professor of Clinical Medicine,
College of Physicians and Surgeons of Columbia University,
and Past President,
Columbia Presbyterian Medical Center, New York, New York
JOHN A. NORRIS, Corporate Executive Vice President,
Hill and Knowlton, Inc., Waltham, Massachusetts,
and Lecturer in Health Law,
Harvard School of Public Health, Boston, Massachusetts
EDWARD H. SHORTLIFFE,* Professor of Medicine and Computer Science; Head,
Division of General Internal Medicine;
Medical Information Sciences Training Program, Stanford University School of Medicine, Palo Alto, California
HENRY KRAKAUER, Director,
Office of Program Assessment and Information, Health Standards and Quality Bureau, Health Care Financing Administration, Baltimore, Maryland
DONALD A. B. LINDBERG,* Director,
National Library of Medicine, National Institutes of Health, Bethesda, Maryland
RICHARD S. DICK, Study Director
ELAINE B. STEEN, Staff Officer
EVANSON H. JOSEPH, Project Secretary
KARL D. YORDY, Director,
Division of Health Care Services
KATHLEEN N. LOHR, Deputy Director,
Division of Health Care Services
MARILYN J. FIELD, Deputy Director,
Division of Health Care Services
KARLA SAUNDERS, Administrative Assistant
The publication of a revised edition of an Institute of Medicine (IOM) report is atypical. In this case, the high, persisting demand for the original report and continued interest in computer-based patient records (CPRs) led the IOM to endorse the production of a second edition 6 years after the release of the original report. The initiation of the second report corresponded with the midway point of the target set in the recommendations of the Committee on Improving the Patient Record for achieving widespread implementation of CPRs in 10 years. Financial support from both the public and private sectors made the publication of the second edition a reality. This edition contains a new Preface, two commentaries that report on the state of CPRs today, and the full text of the original report published in 1991. The commentaries are individually authored and are not the product of a study committee, but like all IOM publications, they did undergo the standard National Academy of Sciences/National Research Council report review process. The authors of the commentaries are distinguished leaders in the field of medical informatics and are particularly well known for their work on CPRs. Drs. Paul C. Tang and W. Ed Hammond are past chairs of the Computer-based Patient Record Institute (CPRI), Dr. Jan H. van Bemmel edits the annual Yearbook of Medical Informatics for the International Medical Informatics Association, and Drs. Astrid M. van Ginneken and Johan van der Lei have written extensively on CPRs.
Six years has proven to be a long time in the world of health care. When the original report was released in 1991, the genetic locations of mutations that result in several major diseases were still unknown and laparoscopic surgery was just coming into widespread use. We had essentially nothing
to offer AIDS sufferers in the way of treatment, neither did we use umbilical cord blood for bone marrow transplantation. During these past few years comprehensive government-led health care reform reached its pinacle, was defeated, and market-driven changes in health care financing and delivery permeated much of the country.
There have been equally significant changes in information technology. Between 1991 and 1997, there was a 8-fold increase in power and capacity of personal computers and comparable improvements in peripheral devices with the result of making powerful workstations more affordable. The dramatic strides in computer technology have been accompanied by the massive growth of the Internet, as well as of local and regional networks that link communities, schools, health care providers, and individuals to information resources around the world.
Despite this milieu of rapid change, the vision outlined in this report by the Committee on Improving the Patient Record remains remarkably on target, and the case for CPRs is stronger today than it was 6 years ago. The demand for timely, accurate health data continues to grow. The changing demographics of the population are placing more demands on the information capabilities of health care providers and systems. The increasing volume of data collected and the continued growth of medical knowledge have created a dramatic need for information technology appropriate for the task of sorting through all the information available, assessing the strength of the evidence, and bringing it to practitioners whenever they need it, particularly at the time they are making care decisions. Further, the evolution of health care delivery organizations into integrated delivery systems means that those organizations need a way of managing their services. And, of course, citizens and other purchasers need better tools for assessing the performance of health care providers as well as for managing their own health care decisions.
Looking ahead, current trends in health care delivery, management, and research will likely broaden the vision of CPRs in two areas: population-based management of health through computer-based population records and citizen-based management of health through another variant of the CPR, the computer-based personal health record. First, CPRs will play an increasingly important role in supplying data for computer-based population data bases. High-quality data are essential to the management of care for individuals; however, such data are equally critical for research, to support public health activities, and to track the performance of health care providers—both individuals and institutions. Second, as people continue to become more active consumers of health care and assume greater responsibility for managing their own health, and as information technology becomes available in more homes, individuals will increasingly use elements of the CPR and CPR-related technology to search through the health literature,
communicate with their health care professionals, access data on their health care history, track the costs and value of the services they receive, diagnose acute conditions, and manage chronic conditions. The emergence of personal health information systems—customer-based personal health records—that are responsive to a variety of needs of individuals raises new opportunities for systems developers to provide complicated information in an easily understood format. Moreover, integrated delivery systems may increasingly view customer-based personal health record systems as a means of attracting new members, streamlining communication with patients, and diagnosing and monitoring patient conditions remotely and cost-effectively.
The demand for CPR systems has steadily increased since the release of the first edition of this report. CPR innovators—in the United States, Europe, and elsewhere—are proving not only that CPRs can meet users' needs, but also that there are significant benefits to be gained from their use. Recent experience has shown that access to data and information at the point of care and the ability to analyze data for management and research purposes improve the quality and reduce the costs of care. These capacities are critical for any health care provider—whether a group practice, hospital, or integrated delivery system—to function successfully. Thus, CPRs are, and will continue to be, an essential technology for health care.
Today there are several examples of quite robust hospital-based CPR systems developed by individual institutions, and commercial systems have moved toward achieving the 12 attributes of CPRs outlined in the original report. Plenty of room remains, however, to combine the depth of systems developed by institutions with easily modified, modular architecture, readily available technology, and the use of national standards. Even as CPR systems become increasingly robust, there is not, nor is there likely to be, a single CPR product that meets all the needs of a provider organization. Thus, organizations seeking CPRs face significant challenges in integrating various systems to achieve the full functionality they need. Moreover, CPR diffusion goes far beyond technology within an organization and relies at least as much on a change in culture that requires motivated, educated leadership within institutions.
Until CPR use becomes the norm for all practitioners across all provider settings as recommended in the original report, we will continue to lack the tools needed to manage the quality and costs of health care, the scientific basis for health care will continue to be undermined, and the dramatic transformation of health care so urgently required will be impeded. Thus, a major challenge facing us is to determine how to advance from where we are to where we need to be with respect to the development and diffusion of CPRs. How can we take full advantage of the lessons learned by the leaders in CPR development and reduce the problems for future CPR users?
Where should we as individuals and organizations interested in achieving the potential of CPRs devote our time and financial resources?
The two commentaries give readers an opportunity to reflect on these questions. In the first chapter of this edition, Drs. Tang and Hammond describe environmental changes that reinforce the need for CPRs, review developments in the United States since 1991, and provide insight into remaining challenges. In the second chapter, Drs. van Bemmel, van Ginneken, and van der Lei describe the state of CPRs in Europe. In so doing, they highlight areas in which efforts in the United States can benefit from European experience; for example, the entire European community has a ubiquitous privacy law whereas the United States cannot seem to accomplish this important objective. They also report that there has been more activity on CPR systems for generalists compared to the United States, where the early focus of CPR development efforts was heavily titled toward the hospital environment. Not surprisingly, both chapters emphasize the need for collaboration to further refine CPRs.
The commentaries also provide a sense of the impact of the recommendations in the original report. Briefly, varying degrees of progress can be observed on the seven recommendations originally made in Chapter 5 of this report. First, some institutions have implemented computer systems that fulfill many of the desirable functions of a CPR as their standard record for patient care; other institutions and providers are using both paper and computer systems, but see CPRs as inevitable. Second, since its creation in 1992, CPRI has been a focal point for CPR issues and has grappled with the challenges of expanding the understanding of the pivotal role of CPRs in health care delivery and of eliminating key barriers to CPR diffusion. Toward that end, in November 1996, CPRI organized a CPR summit with other major health informatics organizations to ratify and endorse actions that will overcome barriers to effective use of information technology in health care. The summit was successful in generating a high degree of consensus for immediate action.
Third, support for CPR research and development for CPRs exists, but it has not been provided in the scope and scale necessary to enable major breakthroughs. Federal funding in the United States has been modest and inconsistent; it is typically focused on research issues and is not always directly related to the development of working CPR systems. In general, private health foundations have been distressingly slow to invest their resources in this critical area and the potential for collaboration between the public and private sectors to direct policy and to leverage resources has not been achieved.
Fourth, although work on various standards has been steady and limited progress is evident, setting standards remains an arduous process with limited financial support. Moreover, a greater focus on international standards
is needed. Fifth, federal laws related to CPRs (e.g., data ownership, responsibility, and confidentiality) are still lacking. At least in the case of protection of personal health data, lively discussion and debate have prevented a consensus leading to the enactment of sound policy. On a more positive note, however, the United States Department of Health and Human Services has created a high-level data council, and its National Committee on Vital and Health Statistics is refocusing its efforts on the handling of data in part through the mandate of Public Law 104-191, the Health Insurance Portability and Accountability Act.
Sixth, no progress can be reported on the recommendation that the costs of developing and implementing CPRs should be shared among those who benefit from them. The cost of capitalizing CPR systems remains a significant hurdle for individual institutions, and it is a serious policy issue that must be addressed. Finally, anecdotal evidence indicates that there are better educational opportunities for health care professionals to acquire the skills necessary to develop and use CPRs. There is, however, an equally important need to educate administrators and other people involved in allocating resources to and selecting CPR systems about both the benefits and complexities of CPR systems.
An important issue emerges after reviewing the limited impact of the committee's seven recommendations over the past 6 years. What else needs to be done to advance CPRs? What would help to jumpstart this process and expedite progress toward the committee's original goal of widespread implementation of CPRs by 2001? Again, the commentaries shed light on these questions. The original report called for federal support of CPRI, public and private support of research and development, federal laws related to CPRs, and collaboration among various public and private groups to explore CPR reimbursement mechanisms.
As Drs. Tang and Hammond report, individual federal agencies have played a role over the past few years, but a coordinated, comprehensive, funded policy has not emerged. In contrast, Drs. van Bemmel, van Ginneken, and van der Lei report on several specific ways in which the European Union is supporting CPR development. Thus, in the United States, we need to establish the appropriate role of government, particularly the federal government, in advancing the development and implementation of CPRs.
A coordinated national program for CPR advancement in the United States could be based on the seven recommendations presented in the original report. Such a program would build on existing private sector efforts and strengthen them by bringing both policy and funding leverage that the private sector cannot provide alone. As was emphasized in the original report, the federal government should not take exclusive control of CPR development and implementation; the private sector's perspectives are vital to a sound approach to CPR development.
Several of the remaining critical impediments to CPR development outlined in the commentary by Drs. Tang and Hammond are not just intractable, but virtually impossible to overcome, if pursued by the private sector alone. Moreover, crucial incremental efforts are more likely to succeed in the context of a comprehensive national program. There is every reason to push for increased government involvement without delay so that quality, cost, and access to modern, evidence-based health care can be achieved. The original 10-year target remains within reach, but only if a national effort is undertaken immediately.
Significant challenges abound: building the requisite infrastructure, optimizing the available technology (including integrating various systems), ensuring the availability of enough people with the right skills, addressing organizational culture and change issues, and confronting financing and policy issues. Clearly, this most essential of all elements of modern health care—a robust CPR—has a growing body of advocates. The challenge is to coalesce these parties into a public-private partnership dedicated to creating through the information infrastructure a better health care system for all Americans. As the Preface to the first edition concluded,
Success will require cooperation and coordination, and perhaps some sacrifice and compromise as well, but we are fully convinced that the outcomes will be well worth such an effort. What we believe will emerge will be a more caring, more scientific, and no less important, more cost-effective health care system. (Pp. vi-vii)
We hope that this report will continue to be a catalyst to encourage people to take advantage of the opportunity at hand. We must move from debate and discussion about the remaining impediments to education, investment, and most important, to action by both the private and public sectors to realize the potential of the CPR as an—perhaps the—essential technology for health care.
Don E. Detmer, M.D., and Elaine B. Steen, M.A.
Health care professionals and policymakers seeking to ensure greater value in health care services face many boundary conditions that are fixed and a host of problems that are not. Today, the opportunity to affect one of those boundary conditions—the information management capabilities in health care—is within our grasp. This report advocates the prompt development and implementation of computer-based patient records (CPRs). Put simply, this Institute of Medicine committee believes that CPRs and CPR systems have a unique potential to improve the care of both individual patients and populations and, concurrently, to reduce waste through continuous quality improvement.
We are not suggesting a simple automation of the current patient record. Rather, we envision the next generation of CPRs and CPR systems as essential to the full maturation of the scientific basis of health care. The report outlines the basic components of future CPRs and a strategic plan for achieving widespread CPR implementation. Further, it identifies the key organizations that will need to play major roles if the plan is to succeed.
The vision of the patient record of the future that emerged from the committee's deliberations seems uniquely appropriate for a nation that values pluralism and privacy and has a mobile population with growing levels of chronic illness. CPRs are a key infrastructural requirement to support the information management needs of physicians, other health professionals, and a variety of other legitimate users of aggregated patient information. It is this vision, as much as any other message, that the committee hopes will engage the reader. We believe that if enough individuals become embued with this sense of the possible, the reality will emerge.
Our report is intended for a very broad audience. We see it as especially pertinent for physicians and other health care practitioners; health care managers; medical record professionals; health services researchers; medical informatics researchers; computer vendors; third-party payers; the legal community; federal, state, and local health care agencies; state legislators; members of the federal legislative and executive branches of government; and, finally, interested citizens. All these parties, we believe, have much to gain from the success of CPRs and CPR systems.
Happily, this report complements and is complemented by several other recent activities that convinced us, as we proceeded with our work, that the time was ripe for a major CPR initiative. The Office of Science and Data Development of the Agency for Health Care Policy and Research (AHCPR) is leading efforts to improve the quality and quantity of data available for health services research—particularly effectiveness, appropriateness, and outcomes research. In addition, the AHCPR Forum on Quality and Effectiveness in Health Care, the American Medical Association, and other professional organizations are playing a major national role in the development of clinical practice guidelines. The CPR will be a boon to both these endeavors.
The activities of several other groups also lend support to the move toward widespread implementation of computer-based records. The General Accounting Office recently released a forward-looking report on the potential benefits of patient record automation. Several Institute of Medicine reports published over the last two years cite the need for improved patient data collection to support quality assurance, utilization management, and effectiveness research. The National Science Foundation recently issued a report on the benefits of a national system for very high-speed data communication, including health data. Finally, the National Research Council's recently released report on safe computing in the information age outlines problems and opportunities in computer security.
Given this apparent climate of opportunity for CPR development and implementation, the committee came to the end of its work eager to disseminate its message regarding the feasibility and potential of CPRs and CPR systems. The natural ebullience common to the conclusion of a study was tempered, however, by the untimely death of committee member Nicholas E. Davies. Dr. Davies saw more clearly than many of us what needed to be done to implement the vision of fully developed patient records and had committed his considerable personal energies to achieving our collective goals for CPRs and CPR systems. For this reason we feel it appropriate to dedicate this report to him and to his belief in our vision.
If this project is to succeed, we must soon see organizational efforts that adopt and implement, or refine and implement, our recommendations. Success will require cooperation and coordination, and perhaps some sacrifice
and compromise as well, but we are fully convinced that the outcomes will be well worth such an effort. What we believe will emerge will be a more caring, more scientific, and, no less important, more cost-effective health care system. We hope that this report will be a catalyst to encourage you to join with us to address the opportunity at hand.
Finally, on a personal note, the enthusiasm, involvement, and support of the many individuals and institutions acknowledged elsewhere in this report were deeply appreciated.
Don E. Detmer, M.D.
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This revised report was an unusual effort stimulated by both the widespread interest in the original committee report and the rapid pace of developments since the publication of that report. In addition to the authors of the two commentaries, the editors want to acknowledge the contributions of Octo Barnett, M.D., Harvard University, who substantially strengthened the commentaries through his rigorous review. At the Institute of Medicine, Marilyn J. Field, Ph.D., Deputy Director of the Division of Health Care Services, offered to steer the revised report through the various stages of fundraising, editing, report review, and publication. Karla Saunders worked with drafts of the national and international commentaries to prepare them for review and for publication. Claudia Carl, Mike Edington, and Mona Brinegar provided additional assistance at various stages in the process. Margret Amatyakul, Executive Director of the Computer-based Patient Record Institute, was instrumental in helping to raise funds and otherwise support this revised edition.
Support for this revised edition was provided by the National Library of Medicine and the Centers for Disease Control and Prevention through the Computer-based Patient Record Institute. Additional support was provided by the Joint Commission on Accreditation of Healthcare Organizations, Oceania, Inc., American Board of Family Practice, Inc., MedicaLogic, Inc., 3M, Association of Operating Room Nurses, Inc., Adventist Health System Sunbelt Health Care Corporation, Computer-based Patient Record Institute, Inc., American Health Information Management Association, Ernst & Young LLP, and Hewlett-Packard.
Support for the committee report (original edition) was provided by the
American Medical Record Association, Baxter Healthcare Corporation, Booz-Allen and Hamilton, E. I. du Pont de Nemours and Company, Gerber Alley and Company, the John A. Hartford Foundation, Hewlett-Packard Company, IBM Corporation, Kaiser Foundation Hospitals, and Science Applications International Corporation. In addition, the Health Care Financing Administration (Contract No. 500-90-0041), the Department of Veterans Affairs (Contract No. 101-C90014), and the Health Resources and Services Administration provided financial support. Finally, the Agency for Health Care Policy and Research (Contract No. 282-90-0018) provided funds for a workshop that contributed to the deliberations of the study committee; the former National Center for Health Services Research provided funds for planning efforts before the study began (Grant No. 5909 HS055 2602).
The committee would like to express its appreciation for the contributions of many individuals and organizations to this project. In addition to the subcommittee members listed in Appendix A, more than 200 individuals representing organizations throughout the health care sector attended subcommittee meetings or submitted written information, providing the committee with a broad base of information from which to draw. Several subcommittee members led work groups or prepared papers and presentations. Subcommittee chairs and assistant chairs in particular devoted significant amounts of time preparing for their meetings and writing reports of subcommittee findings for use by the full study committee.
Several individuals prepared background papers that were most helpful to the study committee and staff. In addition to Adele Waller (whose paper appears in this volume), the committee acknowledges the contributions of Paul Tang, Donald Lindberg and Betsy Humphreys, Margret Amatayakul and Mary Joan Wogan, John Silva, and Orley Lindgren and Don Harper Mills. The committee also expresses its gratitude to the participants of a workshop on overcoming barriers to patient record development who provided the committee with a sounding board for its ideas about an organizational framework to accelerate such development.
This study would not have been possible without financial support from many entities. Within the private sector, we acknowledge generous support from the American Medical Record Association, Baxter Healthcare Corporation, Booz-Allen and Hamilton, E. I. du Pont de Nemours and Company, Gerber Alley and Company, the John A. Hartford Foundation, Hewlett-Packard Company, IBM Corporation, Kaiser Foundation Hospitals, and Science
Applications International Corporation. Within the public sector, the Department of Veterans Affairs, the Health Care Financing Administration, and the Health Resources and Services Administration provided important funding for the study. The Agency for Health Care Policy and Research (AHCPR) sponsored a workshop on overcoming barriers to patient record development that provided valuable information for the committee's deliberations. Preliminary staff work on the study was supported in part by the Institute of Medicine Council on Health Care Technology, which received financial support from AHCPR's predecessor, the National Center for Health Services Research and Health Care Technology Assessment.
We are indebted to several Institute of Medicine staff members. Enriqueta Bond and Richard Rettig oversaw the initiation of the project. Maria Elena Lara and Ethan Halm provided staff support, and Clifford Goodman (now with the Swedish Council on Technology Assessment in Health Care) provided guidance in the early stages of the study. Karl Yordy, and particularly Kathleen Lohr, helped steer the study through its later phases. Elaine Steen and Richard Dick provided staff support throughout the study and were responsible for preparing this report on behalf of the committee.
All studies rely on the efforts of administrative and financial staff for day-to-day operations. The committee appreciates the contributions of Holly Dawkins, Suzanna Gilbert, Evanson Joseph, Theresa Nally, Delores Sutton, and H. Donald Tiller in project administration and Cynthia Abel, Lisa Chimento, and Nina Spruill in financial administration. Finally, we thank Leah Mazade for her editorial comments on this report.
A PROGRESS REPORT ON COMPUTER-BASED PATIENT RECORDS IN THE UNITED STATES
A PROGRESS REPORT ON COMPUTER-BASED PATIENT RECORDS IN EUROPE