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Impact of information technology on medicine
Pergamon
Technology In Society, Vol. 18, No. 2, pp. 117-126, 1996 Copyright 0 1996 Elsevier Science Ltd Printed in Great Britain. All rights reserved 0160-791x/96 $15.ooto.00
Impact of Information
Technology
on
Medicine Kenneth I. Shine
ABSTRACT Although the health sciences will benefit from many of the advances in information technology that are applied to a wide variety of research areas, information technology is of particular importance to health care delivery. Developments of computerizedpatient records will enhance the efJiciency, effectiveness, and d&ribution of health care. As managed care programs develop, populationbased information will be of increasing importance to health care providers and to the public health community. The capacity to transmit this information Kenneth 1. Shine, M.D., is Fresi~nt of tbe Institute of Medicine, National Academy of Sciences, and Professor of Medicine Emerih& at the University of California, Los Angeles (UCLA> School of Medicine. He h UCLA SchooCof Medicine’s immediate past Dean and Prouost for Medical Sciences. CuwentCy he is CCinicaCProfessor of Medicine at the Georgetown University of School of Medicine. A cardiologist and pbysiologht, Dr Shine received his A.B. from Harvard CoCCegein 1P57 and bki M.D. from Harvard Medical School in 1961. Most of his advanced training was at Massachusetts General Hospital (MGH), where be became Chief Resident in Medicine in 1968. Following his postgraduate training at MGH, be held an appointment as Assistant Professor of Medicine at Harvard Medical School. He moved in 1971 to the UCLA School of Medicine and became Director of the Coronary Care Unit, Chief of the Cardiology Division, and subsequently, Chair of the Department of Medicine. As Dean at UCLA, Dr Shine stimulated major initiatives in ambulatory education, community service for medical students andfaculty, mathematics and science education in the pubCic schools, and the construction of new research faciCities funded entirely by tbe private sector. Dr Shine is a member of many honor@ and academic societies, including Phi Beta Kappa and ACpba Omega Alpha, Fellow of the American CoCCegeof Cardiology and American College of Pbysicians, and was elected to the Institute of Medicine in 1988. He served as Chairman of the Council of Deans of the Association of American Medical CoCCeges from 2991 to 1992, and was President of tbe American Heart Association from 1985 to 1986. Dr Shine’s research interests include metabolic events in the heart muscle, the relation of behavior to heart disease, and emergency medicine. He participated in eflorts to prove the value of cardiopulmonary resuscitation following a heart attack, and in establishing tbe 911 emergency telephone number in the multijurisdictional Los Angeles area. Dr Shine is the author of numerous articles and scientifk papers in the area of heart physiology and clinicat research. 117
118
K. 1. Shine
through telecommunicationlinkages,includingtelemediche, will revolutionize the accessibilityof health care to underservedareas, includingboth rural and urbanpopulations.Thesedevelopmentswill raisesubstantialconcernsregarding confidentialityand privacy because informationon healthmay be very relevant to employment and insurability.EfJicient,effective,reliableinformationsystems could,infact, enhance the human qualityofpatient/doctor interactionsby focusing on clinicaldecisionmakingandpatientprefmencesratherthan routine data collection.In this regard, information technology might, in fact, enhance the quality of that interaction.However, there are also major risksthat information systems willbe substitutedfor the human touch. lljis riskshould be clearlyunderstood and avoided. Copyright0 1996 ElsevierScience Ltd
The spectrum of potential applications of information technology to medicine is extraordinarily broad. Since advances in medicine depend critically upon relevance in health science research, it is clear that applications of information technology to the overall research enterprise will have important implications for medicine. Many of these developments will parallel those in other areas of science discussed in this special issue. Therefore this discussion will focus primarily upon the applications of information technology to the care of individualpatients and groups of patients with an emphasis upon the interfaces that will be critical to enhance the quality of care, manage resources, enhance access, and control the rate of rise of health care costs. A critical element for the field is the necessity to connect the latest information to the acute needs for decision making in the care of patients.
Computerizea Patient Records
The practice of medicine to this day largely consists of a written patient record. Although entries of laboratory data generated through computerized systems may be included, they usually are inserted manuaIly into such a record, which forms the repository of information about a single patient. In 1991, the Institute of Medicine published a report on the computer-based patient record as essential technology for health care.’ The committee, chaired by Professor Don E. Detmer, defined a computer-based patient record as “an electronic patient record that resides in a system specilically designed to support users by providing accessibility to complete and accurate data, alerts, reminders, clinical decision support systems, links to medical knowledge, and other aids.” Too often the current paper-based patient record is incomplete, illegible, or unavailable. Even within the same institution, there are often significant delays before the patient’s record can be found. There is nothing more frustrating to the emergency room physician than to confront an acutely ilI and sometimes unresponsive patient who has been followed by local physicians and/or physicians in that very hospital only to find that the patient’s record is signed out of the record room or otherwise
Impact
of Information
Technology On Medicine
119
unavailable. In some studies, as many as 48 percent of records were inadequate for determinin g the principal diagnosis. A well-designed computerbased patient record can be available to any authorized health care provider regardless of location. In addition to providing previous historical information about the patient, diagnoses, medications, and treatment parameters, such systems can alert the practitioner to allergies, idiosyncratic responses to treatment previously administered, and even include relevant citations in the medical literature that apply to the management of that particular individual. In certain welldefined areas such as drug therapy, computerized technology is currently in place in many institutions and in pharmacies. These systems not only record the patient’s previous prescription history, known allergies, and dispensing record, but they also can be programmed to identify potential drug interactions when a new drug is issued and also determine whether the patient and/or the patient’s family has been properly instructed with regard to side effects or adverse outcomes of the drug. As with any information technology, the quality of the input data is most critical. In this regard information systems in departments of radiology, pharmacy, and clinical laboratories have developed at a rapid pace and can input individual patient record promptly and accurately. Increasingly, nursing staff has become comfortable with such technology, including assessment of current care and scheduling of follow-up appointment services and treatments. The weakest link generally is the physician. New technologies that simplify the capacity of the physician to input information are critical. As physicians become more computer literate and have more experience with personal computers, they will become more willing to input directly such data. However, technologies such as voice-recorded notes and the use of hand-held devices to allow rapid entry into the patient record will dramatically enhance the development and accuracy of these records. Increasingly, the patient also will input information directly into the patient record. More and more patients are comfortable in providing historical information, data about present and past illnesses, and symptoms to computerized systems. Indeed, some pilot projects have demonstrated the capacity of such systems to analyze the patient’s condition and make recommendations with regard to specific treatments. For example, initial treatment of urinary tract infections in selected patients may be carried out without a physician visit using programs that recommend antibiotic therapy with oversight from a nurse practitioner. As a result of the Institute of Medicine report, a not-for-profit organization known as the Computer-Based Patient Record Institute has been developed to promote, facilitate, implement, and disseminate the computer-based patient record. A major concern of such records is confidentiality. This is a subject to which I shall return. Population-based
Information
Technology
Historically, Medicine has assigned the responsibility for understanding the health of populations to Public Health. Rapid changes in technology and in
120
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the health care delivery system now allow for better attention to the health status and management of populations of patients. Such a population-based approach can begin in the individualphysician’s practice. Many practitioners in solo or group practice have installed computer systems for scheduling appointments and for billing. Increasingly such systems can collect information with regard to diagnosis and treatment. It is quite feasible for a physician to identify all of the patients with high blood pressure within the practice to determine which ones have good, fair, or inadequate hypertension control, and relate this to the therapeutic programs being used. In this way, the physician learns from the population of hypertensives, diabetics, cardiacs, or others within the practice about what is working and what does not work in the specific practice. Such technology now is being expanded dramatically by new developments in managed care. In the absence of agreement upon a national approach to health care reform, the marketplace is now driving the health care system into one in which populations of patients are enrolled in competing managed care organizations. Such systems include staff model health maintenance organizations such as the Kaiser Permanente system as well as organizations of physicians in systems of coordinated care organized by themselves or more commonly through an insurance company. Managed care systems require substantialinformation with regard to utilization of services, costs, and revenues. The population of patients now extends beyond that of an individual’s practice to many thousands or ten of thousands of patients in a managed care system. Information systems are essential to the management of these entities. Moreover, most of these managed care organizations operate on frxed annual budgets so that activities that promote health and prevent disease are economically advantageous. The improvement in prenatal care, immunizations, appropriate application of mammography or cervical smears for early detection of cancer become cost-effective interventions to the organization. It is critical to the system to know which enrollees are eligible or in need of these services and to what extent they have been employed. Purchasers of services from these managed care organizations, particularly employers, have a substantial interest in understanding about the health of their employees and the effectiveness of the preventive and therapeutic programs being implemented. As buyers demand this information, providers increasingly are required to develop more and more sophisticated information systems for providing such timely data. As the computerized patient record develops and diffusesmore rapidly, it will become an immediate source of this population data, although there will probably also be need for specific other kinds of population-based inquiries which go beyond the patient record. Some systems of care are relatively far advanced in both the individual and population-based information systems. These include the efforts of the Veterans Administration health care system to collect such information for veterans and those of the Department of Defense to collect information regarding active duty personnel and military retirees. Both of these systems involve individualswho are mobile and who often live at long distances from
Impact of Information
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tertiary care centers. As these systems develop more ambulatory facilities in more isolated areas, access to the patient record at the distant site as well as tabulation of information from that site to the system as a whole have become increasing priorities. Clinical Decision Making Shortly after I relocated to Washington, D.C., I was asked by a colleague to refer his 24 year old son for a delicate heart procedure. Not knowing the community well, I went to the medical literature with regard to the results reported by various groups in the Washington/Maryland/Virginiaarea to discover that the best therapeutic results for this procedure was not at the major medical center that I had first anticipated, but rather at a smaller, less well-known institution. The patient was the first of many that I referred for this procedure to the cardiologist whom I had discovered through this methodology. Not only have the results been technically superb, but the cardiologist also turned out to be extremely effective as a communicator and as a compassionate physician. A critical element for the future of America’s health care system is wellinformed patient/doctor joint decision making. This concept applies not only to individual patients and individual doctors, but also to groups of patients and to groups of physicians. If quality of care is to be maintained in an environment driven by efforts to contain costs, it is essential to know what the outcomes of care are as provided by individuals, by institutions, or by systems of care. In the state of New York, for example, the surgical results for a coronary artery bypass surgery as well as the results from coronary balloon dilatation (angioplasty) are recorded annually for each hospital. Moreover, the institutions are provided with this information on each of the operators doing these procedures. Initially, there was almost a tenfold variability in mortality with surgeons doing relatively small numbers of cases having the highest mortality rates. Models were developed in order to adjust these numbers to the degree of medical surgical risk reflected in each of the populations. Programs were developed so that a data coordinator at each institution could easily collect and enter this information, which could then be processed by the State Department of Health.* Some of the programs have developed in a number of other states. Moreover, large employers are now demanding similar information from managed care organizations with whom they contract. They will use this information not only to make judgments about those systems with whom they will contract, but also to synthesize information for their employees in order that rational decisions can be made about which plan to join. A family with a child who will eventually require corrective orthopedic or cardiac surgery clearly wants to enroll in a plan in which the outcomes of care for these problems are outstanding. An important consequence of joint decision making is the frequency with which patients, when fuIly informed, may choose more conservative and less expensive treatments than would otherwise be recommended. Although
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there will always be patients or families who will always demand that everything possible be done, this often occurs under circumstances in which the benefit risk cost considerations are not fully elucidated for the patient. Moreover, in many cases, physicians refer patients because of traditional professional relationships without having upto-date or accurate information with regard to the outcomes of care provided for those to whom they refer. Particularly for low mortality procedures, an individual practitioner may not refer enough patients to know that a provider has a three percent mortality for a procedure that ought to have a one percent mortality. Information systems that rapidly provide data with regard to the outcomes of care are critical to the physician who is involved in decision making so that the best advice is provided to the patient. Information is critical to the patient, who must understand the therapeutic options and risks and participate in a joint process of decision making. Videodisc presentations of information about diagnosis treatment and with descriptions of therapeutic options now exist and are becoming increasingly interactive. Patients may make these decisions as individuals through their employers who contract for care and, as in the state of Oregon, as a result of a public determination of the priorities for care that will be provided. Information technologies that can connect individual experiences with results for groups of patients suffering from a similar problem to outcomes data, which will assist in decision making, will be an essential part of 21st Century health care. While the rational decision-making process by the individuals involved may help substantially to decrease the rate of rise of health care costs, there may come a point at which society must make decisions with regard to the extent to which it can afford to provide services. Having well-functioning information systems in order to understand risk benefit relationships will be absolutely essential to such decision-making processes, whether they are carried out by an employer, the state, the federal government, or individual patients. Geography and Informatz’on
Nationally, the distribution of physicians and other health care providers is very uneven. Rural communities continue to have major deficiencies in such personnel, and small rural hospitals continue to close at a rapid rate. The increasing number of women in medicine, and the high proportion of marriages between physicians make it increasingly difficult to recruit individual family physicians to provide comprehensive care in rural communities. At the same time, many urban and rural communities are lacking in medical personpower not only for economic reasons but also for cultural and social reasons. Although solutions will vary significantly from one community to another, it is increasingly apparent that the role of non-physician providers will increase in both rural and inner city environments, and that technologies will continue to expand so that providers, physicians or non-physicians, can get rapid consultation and advice with regard to particular problems. Telemedicine is one example of such approaches. This technology is not only
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available so that a consultant can visualize a patient at a distant site, review laboratory radiologic data, and discuss the problem with both patient and provider at the remote location, but also eventually will allow actual supervision of procedures and treatments. The U.S. Army Medical Command, for example, has developed telemedicine technology so that medics assigned to small groups of soldiers in such remote places as Macedonia or Mogadishu, Somalia, can obtain, by satellite, consultation information and participate in decisions on treatment and evacuation of individuals. Technologies have developed so that surgeons learning new minimally invasive surgical procedures using fiberoptic scopes can return to their community under conditions in which the first few procedures that they perform can be monitored by an expert at a central specialty center using telecommunications. With the spread of Internet and the addition of these kinds of other technologies, it should be possible for a physician anywhere in the world to obtain the most recent information regarding diagnostic or therapeutic options or modalities. The National Library of Medicine has pioneered in the development of a number of information systems available to the practitioner in real time. This access to the literature, including bibliographies, abstracts, reviews, and the papers themselves, have already begun to break down geographic and other spatial barriers to the application of this information to patient care. Some American hospitals have already instituted systems whereby the computer on the individual patient floor is not only used to managed laboratory data and other patient information but also provides direct access to the literature that may be relevant to the care of that particular patient. As a teacher in such an institution, I find it remarkable how teaching rounds have changed. Often, the student becomes the most important teacher on such rounds because of immediate access to the literature with regard to the patient being considered. Under these circumstances, teaching rounds is much more about judgment and decision making than it is about facts-as they should be! Confidentiality
and Accuracy
As technology leaps forward, no problem in developing information for medicine exceeds the concerns related to confidentiality and accuracy of data. Confidentiality becomes critical not only because of the privileged nature of the physician/patient relationship, which must proceed in an uninhibited and trusting manner, but also because of the potentially perverse use of such information, which can be made by insurers or employers. On the one hand, patients are not likely to divulge to their physicians potentially embarrassing or extremely personal information essential to care if they believe that there is an opportunity for a third party to obtain access to this information. On the other hand, access to such straightforward information as diagnosis may have a profound effect upon the willingness of an employer to hire or to continue in employment an individual who may be at significant risk for health care expenditures. Health maintenance organizations might
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attempt to exclude from enrollment individuals with known preexisting conditions or diagnoses that place them above average in potential for health care expenditures. Insurers similarly might screen such individuals through such databases. In the 1994 report of the Institute of Medicine, entitled Health Data in the Information Age: Use, Disclosure, and Privacy,’ the need for confidentiality is reiterated. The committee recommended that “a health database organization not release person-identifiable information in any other circumstances except the following: l
l l
l
l
l
l
to other health database organizations whose missions are compatible with its confidentiality and security precautions are at least as stringent as their own; to individuals for information about themselves; to parents for information about a minor child, except when such release is prohibited by law; to legal representatives of incompetent patients for information about the patient; to researchers with approval from their institution’s properly constituted institutional review board; to licensed practitioners with a need to know when treating patients in life-threatening situations who are unable to consult at the time care is rendered; and, to licensed practitioners when treating patients in other (nonthreatening) situations, but only with the informed consent of the patient.”
The committee also specifically recommended “that employers not be permitted to require receipt of an individuals data from a health database organization as a condition of employment or for the receipt of benefits.” The value of information about individual patients and groups of patients due to multiple uses has resulted in the concept of the health database organization. These are organizations that “have access to (and possibly control of) databases and a primary mission to publicly release data and the results of analysis done on the databases under their control.“3 These organizations have the capacity to collect data from multiple providers in other organizations within a region or nationally. While there are important social and societal benefits from the collection of such information, it is clear that individual rights and privacy must be protected. It is also critical that information be accurate. The potential harm to a patient of incorrect data might well be life threatening. Regular opportunities for assessment of this information by the patient and/or the patient’s primary provider as well as a methodology for rapidly correcting inaccuracies is essential if these information systems are to minimize potential adverse outcomes. Information
Versus Compassion
American medicine has been in the vanguard of the uses of science and technology for health care. From polio vaccine to magnetic resonance imaging (MRl) or organ transplantation, American medicine has led the world.
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125
Until recently, however, the practice of medicine, while actively using science, was itself rather unscientific. Little emphasis was placed upon the process by which decisions regarding care was made. Minimal data has been available with regard to the health status of populations or of individual patients. Effective information systems are only recently becoming part of hospital care, and their introduction into managed care organizations originally was driven primarily by a need for better financial management. Information technology now promises far better opportunities to understand the outcomes of care and to allow for fully informed joint patient/doctor decision making. Does the development of these kinds of technology mean that medicine will become less humane and more technological? I would argue that, properly applied, technology can enhance the art of medicine. At the present time, far too much time in the patient/doctor relationship is spent in obtaining data information. Often, data is collected redundantly with test procedures and information being repeated at each encounter in the system. In many cases, this is because information about previous encounters is unavailable. In others, it is because of a failure to trust the completeness of the data collected in previous experience. To the extent that accurate and timely information is available to both the patient and the physician; to the extent that options are well defined and elucidated for patients, physicians, and patients’ families, there will be far more time for the physician/patient family interaction to revolve around choices and decisions than about collecting information. It is at the point where decisions need to be made that patient preferences, ethics, economics, values, and judgments occur. The increasing development of videodisc technology to communicate these options and choices will allow the patient and the patient’s family to explore this source of information before the decision-making experience. It will substantially level the playing field between the provider and the patient where they are talking to each other much more equally armed with information. As the Internet provides more and more information to physicians, it will provide more and more information to patients. For providers, this development initially will be threatening. Many providers enjoy the authority that comes from knowledge and information. However, increasingly the emphasis in medical education and in practice will be on enhanced communications and the decision-making process. Information technology can not only further the science of medicine and medical practice, but also ultimately enhance the quality of the physician/patient interaction if it is properly managed. The risk is that managed care organizations, in the interest of cost containment, will limit this opportunity. By making visits shorter and shorter and depending increasingly on technology to collect information, the opportunity for quality time may be compressed even more than it is at the present time. Patients, providers, consumers, and purchasers of health care must insist that there be quality time for decision making regardless of whom and how the information is developed and regardless of what therapies or inter-
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ventions are under consideration. If this is done properly, information technology can be liberating. If it is not done properly, if it is treated as a substitute for the human interaction, the result will be negative. The deveIopment of comprehensive health care provider teams, including physicians, advanced practice nurses, physician assistants, home health aides, nutritionists, and others, to provide comprehensive care offers opportunities for a variety of personnel to interact in a humane way with patients. However, they must all have to have access to relevant information, understand the plans of the patient, and communicate in a consistent and reinforcing, rather than a confusing, manner. This is one of the great promises of information technology for medicine. Notes 1. Institute of Medicine, The Computer-Based Pattent Record: An Essential Technology for Health Care, R.S. Dick and E.B. Steen (eds.) (Washington, D.C.: National Academy Press, 1991). 2. E. L. Hatman, H. Kilbum, M. Racz et al., “Improving the outcomes of coronary artery bypass surgery in New York State,”Journal of the Ametkan Medical Association Vol. 271 (1994, pp. 761-766. 3. Institute of Medicine, Health Data in the Information Age: Use, Df3closure, and Privacy, MS. Donaldson and K.N. Lohr (eds.) (Washington, D.C.: National Academy Press, 1994).
Technology In Society, Vol. 18, No. 2, pp. 117-126, 1996 Copyright 0 1996 Elsevier Science Ltd Printed in Great Britain. All rights reserved 0160-791x/96 $15.ooto.00
Impact of Information
Technology
on
Medicine Kenneth I. Shine
ABSTRACT Although the health sciences will benefit from many of the advances in information technology that are applied to a wide variety of research areas, information technology is of particular importance to health care delivery. Developments of computerizedpatient records will enhance the efJiciency, effectiveness, and d&ribution of health care. As managed care programs develop, populationbased information will be of increasing importance to health care providers and to the public health community. The capacity to transmit this information Kenneth 1. Shine, M.D., is Fresi~nt of tbe Institute of Medicine, National Academy of Sciences, and Professor of Medicine Emerih& at the University of California, Los Angeles (UCLA> School of Medicine. He h UCLA SchooCof Medicine’s immediate past Dean and Prouost for Medical Sciences. CuwentCy he is CCinicaCProfessor of Medicine at the Georgetown University of School of Medicine. A cardiologist and pbysiologht, Dr Shine received his A.B. from Harvard CoCCegein 1P57 and bki M.D. from Harvard Medical School in 1961. Most of his advanced training was at Massachusetts General Hospital (MGH), where be became Chief Resident in Medicine in 1968. Following his postgraduate training at MGH, be held an appointment as Assistant Professor of Medicine at Harvard Medical School. He moved in 1971 to the UCLA School of Medicine and became Director of the Coronary Care Unit, Chief of the Cardiology Division, and subsequently, Chair of the Department of Medicine. As Dean at UCLA, Dr Shine stimulated major initiatives in ambulatory education, community service for medical students andfaculty, mathematics and science education in the pubCic schools, and the construction of new research faciCities funded entirely by tbe private sector. Dr Shine is a member of many honor@ and academic societies, including Phi Beta Kappa and ACpba Omega Alpha, Fellow of the American CoCCegeof Cardiology and American College of Pbysicians, and was elected to the Institute of Medicine in 1988. He served as Chairman of the Council of Deans of the Association of American Medical CoCCeges from 2991 to 1992, and was President of tbe American Heart Association from 1985 to 1986. Dr Shine’s research interests include metabolic events in the heart muscle, the relation of behavior to heart disease, and emergency medicine. He participated in eflorts to prove the value of cardiopulmonary resuscitation following a heart attack, and in establishing tbe 911 emergency telephone number in the multijurisdictional Los Angeles area. Dr Shine is the author of numerous articles and scientifk papers in the area of heart physiology and clinicat research. 117
118
K. 1. Shine
through telecommunicationlinkages,includingtelemediche, will revolutionize the accessibilityof health care to underservedareas, includingboth rural and urbanpopulations.Thesedevelopmentswill raisesubstantialconcernsregarding confidentialityand privacy because informationon healthmay be very relevant to employment and insurability.EfJicient,effective,reliableinformationsystems could,infact, enhance the human qualityofpatient/doctor interactionsby focusing on clinicaldecisionmakingandpatientprefmencesratherthan routine data collection.In this regard, information technology might, in fact, enhance the quality of that interaction.However, there are also major risksthat information systems willbe substitutedfor the human touch. lljis riskshould be clearlyunderstood and avoided. Copyright0 1996 ElsevierScience Ltd
The spectrum of potential applications of information technology to medicine is extraordinarily broad. Since advances in medicine depend critically upon relevance in health science research, it is clear that applications of information technology to the overall research enterprise will have important implications for medicine. Many of these developments will parallel those in other areas of science discussed in this special issue. Therefore this discussion will focus primarily upon the applications of information technology to the care of individualpatients and groups of patients with an emphasis upon the interfaces that will be critical to enhance the quality of care, manage resources, enhance access, and control the rate of rise of health care costs. A critical element for the field is the necessity to connect the latest information to the acute needs for decision making in the care of patients.
Computerizea Patient Records
The practice of medicine to this day largely consists of a written patient record. Although entries of laboratory data generated through computerized systems may be included, they usually are inserted manuaIly into such a record, which forms the repository of information about a single patient. In 1991, the Institute of Medicine published a report on the computer-based patient record as essential technology for health care.’ The committee, chaired by Professor Don E. Detmer, defined a computer-based patient record as “an electronic patient record that resides in a system specilically designed to support users by providing accessibility to complete and accurate data, alerts, reminders, clinical decision support systems, links to medical knowledge, and other aids.” Too often the current paper-based patient record is incomplete, illegible, or unavailable. Even within the same institution, there are often significant delays before the patient’s record can be found. There is nothing more frustrating to the emergency room physician than to confront an acutely ilI and sometimes unresponsive patient who has been followed by local physicians and/or physicians in that very hospital only to find that the patient’s record is signed out of the record room or otherwise
Impact
of Information
Technology On Medicine
119
unavailable. In some studies, as many as 48 percent of records were inadequate for determinin g the principal diagnosis. A well-designed computerbased patient record can be available to any authorized health care provider regardless of location. In addition to providing previous historical information about the patient, diagnoses, medications, and treatment parameters, such systems can alert the practitioner to allergies, idiosyncratic responses to treatment previously administered, and even include relevant citations in the medical literature that apply to the management of that particular individual. In certain welldefined areas such as drug therapy, computerized technology is currently in place in many institutions and in pharmacies. These systems not only record the patient’s previous prescription history, known allergies, and dispensing record, but they also can be programmed to identify potential drug interactions when a new drug is issued and also determine whether the patient and/or the patient’s family has been properly instructed with regard to side effects or adverse outcomes of the drug. As with any information technology, the quality of the input data is most critical. In this regard information systems in departments of radiology, pharmacy, and clinical laboratories have developed at a rapid pace and can input individual patient record promptly and accurately. Increasingly, nursing staff has become comfortable with such technology, including assessment of current care and scheduling of follow-up appointment services and treatments. The weakest link generally is the physician. New technologies that simplify the capacity of the physician to input information are critical. As physicians become more computer literate and have more experience with personal computers, they will become more willing to input directly such data. However, technologies such as voice-recorded notes and the use of hand-held devices to allow rapid entry into the patient record will dramatically enhance the development and accuracy of these records. Increasingly, the patient also will input information directly into the patient record. More and more patients are comfortable in providing historical information, data about present and past illnesses, and symptoms to computerized systems. Indeed, some pilot projects have demonstrated the capacity of such systems to analyze the patient’s condition and make recommendations with regard to specific treatments. For example, initial treatment of urinary tract infections in selected patients may be carried out without a physician visit using programs that recommend antibiotic therapy with oversight from a nurse practitioner. As a result of the Institute of Medicine report, a not-for-profit organization known as the Computer-Based Patient Record Institute has been developed to promote, facilitate, implement, and disseminate the computer-based patient record. A major concern of such records is confidentiality. This is a subject to which I shall return. Population-based
Information
Technology
Historically, Medicine has assigned the responsibility for understanding the health of populations to Public Health. Rapid changes in technology and in
120
K. I. Shine
the health care delivery system now allow for better attention to the health status and management of populations of patients. Such a population-based approach can begin in the individualphysician’s practice. Many practitioners in solo or group practice have installed computer systems for scheduling appointments and for billing. Increasingly such systems can collect information with regard to diagnosis and treatment. It is quite feasible for a physician to identify all of the patients with high blood pressure within the practice to determine which ones have good, fair, or inadequate hypertension control, and relate this to the therapeutic programs being used. In this way, the physician learns from the population of hypertensives, diabetics, cardiacs, or others within the practice about what is working and what does not work in the specific practice. Such technology now is being expanded dramatically by new developments in managed care. In the absence of agreement upon a national approach to health care reform, the marketplace is now driving the health care system into one in which populations of patients are enrolled in competing managed care organizations. Such systems include staff model health maintenance organizations such as the Kaiser Permanente system as well as organizations of physicians in systems of coordinated care organized by themselves or more commonly through an insurance company. Managed care systems require substantialinformation with regard to utilization of services, costs, and revenues. The population of patients now extends beyond that of an individual’s practice to many thousands or ten of thousands of patients in a managed care system. Information systems are essential to the management of these entities. Moreover, most of these managed care organizations operate on frxed annual budgets so that activities that promote health and prevent disease are economically advantageous. The improvement in prenatal care, immunizations, appropriate application of mammography or cervical smears for early detection of cancer become cost-effective interventions to the organization. It is critical to the system to know which enrollees are eligible or in need of these services and to what extent they have been employed. Purchasers of services from these managed care organizations, particularly employers, have a substantial interest in understanding about the health of their employees and the effectiveness of the preventive and therapeutic programs being implemented. As buyers demand this information, providers increasingly are required to develop more and more sophisticated information systems for providing such timely data. As the computerized patient record develops and diffusesmore rapidly, it will become an immediate source of this population data, although there will probably also be need for specific other kinds of population-based inquiries which go beyond the patient record. Some systems of care are relatively far advanced in both the individual and population-based information systems. These include the efforts of the Veterans Administration health care system to collect such information for veterans and those of the Department of Defense to collect information regarding active duty personnel and military retirees. Both of these systems involve individualswho are mobile and who often live at long distances from
Impact of Information
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tertiary care centers. As these systems develop more ambulatory facilities in more isolated areas, access to the patient record at the distant site as well as tabulation of information from that site to the system as a whole have become increasing priorities. Clinical Decision Making Shortly after I relocated to Washington, D.C., I was asked by a colleague to refer his 24 year old son for a delicate heart procedure. Not knowing the community well, I went to the medical literature with regard to the results reported by various groups in the Washington/Maryland/Virginiaarea to discover that the best therapeutic results for this procedure was not at the major medical center that I had first anticipated, but rather at a smaller, less well-known institution. The patient was the first of many that I referred for this procedure to the cardiologist whom I had discovered through this methodology. Not only have the results been technically superb, but the cardiologist also turned out to be extremely effective as a communicator and as a compassionate physician. A critical element for the future of America’s health care system is wellinformed patient/doctor joint decision making. This concept applies not only to individual patients and individual doctors, but also to groups of patients and to groups of physicians. If quality of care is to be maintained in an environment driven by efforts to contain costs, it is essential to know what the outcomes of care are as provided by individuals, by institutions, or by systems of care. In the state of New York, for example, the surgical results for a coronary artery bypass surgery as well as the results from coronary balloon dilatation (angioplasty) are recorded annually for each hospital. Moreover, the institutions are provided with this information on each of the operators doing these procedures. Initially, there was almost a tenfold variability in mortality with surgeons doing relatively small numbers of cases having the highest mortality rates. Models were developed in order to adjust these numbers to the degree of medical surgical risk reflected in each of the populations. Programs were developed so that a data coordinator at each institution could easily collect and enter this information, which could then be processed by the State Department of Health.* Some of the programs have developed in a number of other states. Moreover, large employers are now demanding similar information from managed care organizations with whom they contract. They will use this information not only to make judgments about those systems with whom they will contract, but also to synthesize information for their employees in order that rational decisions can be made about which plan to join. A family with a child who will eventually require corrective orthopedic or cardiac surgery clearly wants to enroll in a plan in which the outcomes of care for these problems are outstanding. An important consequence of joint decision making is the frequency with which patients, when fuIly informed, may choose more conservative and less expensive treatments than would otherwise be recommended. Although
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there will always be patients or families who will always demand that everything possible be done, this often occurs under circumstances in which the benefit risk cost considerations are not fully elucidated for the patient. Moreover, in many cases, physicians refer patients because of traditional professional relationships without having upto-date or accurate information with regard to the outcomes of care provided for those to whom they refer. Particularly for low mortality procedures, an individual practitioner may not refer enough patients to know that a provider has a three percent mortality for a procedure that ought to have a one percent mortality. Information systems that rapidly provide data with regard to the outcomes of care are critical to the physician who is involved in decision making so that the best advice is provided to the patient. Information is critical to the patient, who must understand the therapeutic options and risks and participate in a joint process of decision making. Videodisc presentations of information about diagnosis treatment and with descriptions of therapeutic options now exist and are becoming increasingly interactive. Patients may make these decisions as individuals through their employers who contract for care and, as in the state of Oregon, as a result of a public determination of the priorities for care that will be provided. Information technologies that can connect individual experiences with results for groups of patients suffering from a similar problem to outcomes data, which will assist in decision making, will be an essential part of 21st Century health care. While the rational decision-making process by the individuals involved may help substantially to decrease the rate of rise of health care costs, there may come a point at which society must make decisions with regard to the extent to which it can afford to provide services. Having well-functioning information systems in order to understand risk benefit relationships will be absolutely essential to such decision-making processes, whether they are carried out by an employer, the state, the federal government, or individual patients. Geography and Informatz’on
Nationally, the distribution of physicians and other health care providers is very uneven. Rural communities continue to have major deficiencies in such personnel, and small rural hospitals continue to close at a rapid rate. The increasing number of women in medicine, and the high proportion of marriages between physicians make it increasingly difficult to recruit individual family physicians to provide comprehensive care in rural communities. At the same time, many urban and rural communities are lacking in medical personpower not only for economic reasons but also for cultural and social reasons. Although solutions will vary significantly from one community to another, it is increasingly apparent that the role of non-physician providers will increase in both rural and inner city environments, and that technologies will continue to expand so that providers, physicians or non-physicians, can get rapid consultation and advice with regard to particular problems. Telemedicine is one example of such approaches. This technology is not only
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available so that a consultant can visualize a patient at a distant site, review laboratory radiologic data, and discuss the problem with both patient and provider at the remote location, but also eventually will allow actual supervision of procedures and treatments. The U.S. Army Medical Command, for example, has developed telemedicine technology so that medics assigned to small groups of soldiers in such remote places as Macedonia or Mogadishu, Somalia, can obtain, by satellite, consultation information and participate in decisions on treatment and evacuation of individuals. Technologies have developed so that surgeons learning new minimally invasive surgical procedures using fiberoptic scopes can return to their community under conditions in which the first few procedures that they perform can be monitored by an expert at a central specialty center using telecommunications. With the spread of Internet and the addition of these kinds of other technologies, it should be possible for a physician anywhere in the world to obtain the most recent information regarding diagnostic or therapeutic options or modalities. The National Library of Medicine has pioneered in the development of a number of information systems available to the practitioner in real time. This access to the literature, including bibliographies, abstracts, reviews, and the papers themselves, have already begun to break down geographic and other spatial barriers to the application of this information to patient care. Some American hospitals have already instituted systems whereby the computer on the individual patient floor is not only used to managed laboratory data and other patient information but also provides direct access to the literature that may be relevant to the care of that particular patient. As a teacher in such an institution, I find it remarkable how teaching rounds have changed. Often, the student becomes the most important teacher on such rounds because of immediate access to the literature with regard to the patient being considered. Under these circumstances, teaching rounds is much more about judgment and decision making than it is about facts-as they should be! Confidentiality
and Accuracy
As technology leaps forward, no problem in developing information for medicine exceeds the concerns related to confidentiality and accuracy of data. Confidentiality becomes critical not only because of the privileged nature of the physician/patient relationship, which must proceed in an uninhibited and trusting manner, but also because of the potentially perverse use of such information, which can be made by insurers or employers. On the one hand, patients are not likely to divulge to their physicians potentially embarrassing or extremely personal information essential to care if they believe that there is an opportunity for a third party to obtain access to this information. On the other hand, access to such straightforward information as diagnosis may have a profound effect upon the willingness of an employer to hire or to continue in employment an individual who may be at significant risk for health care expenditures. Health maintenance organizations might
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attempt to exclude from enrollment individuals with known preexisting conditions or diagnoses that place them above average in potential for health care expenditures. Insurers similarly might screen such individuals through such databases. In the 1994 report of the Institute of Medicine, entitled Health Data in the Information Age: Use, Disclosure, and Privacy,’ the need for confidentiality is reiterated. The committee recommended that “a health database organization not release person-identifiable information in any other circumstances except the following: l
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to other health database organizations whose missions are compatible with its confidentiality and security precautions are at least as stringent as their own; to individuals for information about themselves; to parents for information about a minor child, except when such release is prohibited by law; to legal representatives of incompetent patients for information about the patient; to researchers with approval from their institution’s properly constituted institutional review board; to licensed practitioners with a need to know when treating patients in life-threatening situations who are unable to consult at the time care is rendered; and, to licensed practitioners when treating patients in other (nonthreatening) situations, but only with the informed consent of the patient.”
The committee also specifically recommended “that employers not be permitted to require receipt of an individuals data from a health database organization as a condition of employment or for the receipt of benefits.” The value of information about individual patients and groups of patients due to multiple uses has resulted in the concept of the health database organization. These are organizations that “have access to (and possibly control of) databases and a primary mission to publicly release data and the results of analysis done on the databases under their control.“3 These organizations have the capacity to collect data from multiple providers in other organizations within a region or nationally. While there are important social and societal benefits from the collection of such information, it is clear that individual rights and privacy must be protected. It is also critical that information be accurate. The potential harm to a patient of incorrect data might well be life threatening. Regular opportunities for assessment of this information by the patient and/or the patient’s primary provider as well as a methodology for rapidly correcting inaccuracies is essential if these information systems are to minimize potential adverse outcomes. Information
Versus Compassion
American medicine has been in the vanguard of the uses of science and technology for health care. From polio vaccine to magnetic resonance imaging (MRl) or organ transplantation, American medicine has led the world.
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Until recently, however, the practice of medicine, while actively using science, was itself rather unscientific. Little emphasis was placed upon the process by which decisions regarding care was made. Minimal data has been available with regard to the health status of populations or of individual patients. Effective information systems are only recently becoming part of hospital care, and their introduction into managed care organizations originally was driven primarily by a need for better financial management. Information technology now promises far better opportunities to understand the outcomes of care and to allow for fully informed joint patient/doctor decision making. Does the development of these kinds of technology mean that medicine will become less humane and more technological? I would argue that, properly applied, technology can enhance the art of medicine. At the present time, far too much time in the patient/doctor relationship is spent in obtaining data information. Often, data is collected redundantly with test procedures and information being repeated at each encounter in the system. In many cases, this is because information about previous encounters is unavailable. In others, it is because of a failure to trust the completeness of the data collected in previous experience. To the extent that accurate and timely information is available to both the patient and the physician; to the extent that options are well defined and elucidated for patients, physicians, and patients’ families, there will be far more time for the physician/patient family interaction to revolve around choices and decisions than about collecting information. It is at the point where decisions need to be made that patient preferences, ethics, economics, values, and judgments occur. The increasing development of videodisc technology to communicate these options and choices will allow the patient and the patient’s family to explore this source of information before the decision-making experience. It will substantially level the playing field between the provider and the patient where they are talking to each other much more equally armed with information. As the Internet provides more and more information to physicians, it will provide more and more information to patients. For providers, this development initially will be threatening. Many providers enjoy the authority that comes from knowledge and information. However, increasingly the emphasis in medical education and in practice will be on enhanced communications and the decision-making process. Information technology can not only further the science of medicine and medical practice, but also ultimately enhance the quality of the physician/patient interaction if it is properly managed. The risk is that managed care organizations, in the interest of cost containment, will limit this opportunity. By making visits shorter and shorter and depending increasingly on technology to collect information, the opportunity for quality time may be compressed even more than it is at the present time. Patients, providers, consumers, and purchasers of health care must insist that there be quality time for decision making regardless of whom and how the information is developed and regardless of what therapies or inter-
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ventions are under consideration. If this is done properly, information technology can be liberating. If it is not done properly, if it is treated as a substitute for the human interaction, the result will be negative. The deveIopment of comprehensive health care provider teams, including physicians, advanced practice nurses, physician assistants, home health aides, nutritionists, and others, to provide comprehensive care offers opportunities for a variety of personnel to interact in a humane way with patients. However, they must all have to have access to relevant information, understand the plans of the patient, and communicate in a consistent and reinforcing, rather than a confusing, manner. This is one of the great promises of information technology for medicine. Notes 1. Institute of Medicine, The Computer-Based Pattent Record: An Essential Technology for Health Care, R.S. Dick and E.B. Steen (eds.) (Washington, D.C.: National Academy Press, 1991). 2. E. L. Hatman, H. Kilbum, M. Racz et al., “Improving the outcomes of coronary artery bypass surgery in New York State,”Journal of the Ametkan Medical Association Vol. 271 (1994, pp. 761-766. 3. Institute of Medicine, Health Data in the Information Age: Use, Df3closure, and Privacy, MS. Donaldson and K.N. Lohr (eds.) (Washington, D.C.: National Academy Press, 1994).