Summary

The patient record touches, in some way, virtually everyone associated with providing, receiving, or reimbursing health care services. This wide range of application and use has led to efforts to automate the collection, storage, and management of the data that constitute these records. But in spite of more than 30 years of exploratory work and millions of dollars in research and implementation of computer systems in health care provider institutions, patient records today are still predominantly paper records. This evident lack of diffusion of information management technologies in the health care sector has limited the tools available for effective decision making from the bedside all the way to the formulation of national health care policy. Given the importance of patient data to the activities of all portions of the health care spectrum, the Institute of Medicine (IOM) undertook a study to improve patient records, acting in response to expanding demands for information and for increased functional capacity of patient record systems, as well as the considerable recent technological advances that bring the benefits of computer-based patient records within reach.

As its first step, the IOM study committee examined why previous work had not resulted in widespread improvement of patient records and asked whether and how another effort might be successful. The committee identified five conditions in the current health care environment that increase the likelihood of success.

  1. The uses of and legitimate demands for patient data are growing. Part of this growth can be attributed to increased concern about the content and value of clinical therapies and a recent intense focus on health services research.


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--> Summary The patient record touches, in some way, virtually everyone associated with providing, receiving, or reimbursing health care services. This wide range of application and use has led to efforts to automate the collection, storage, and management of the data that constitute these records. But in spite of more than 30 years of exploratory work and millions of dollars in research and implementation of computer systems in health care provider institutions, patient records today are still predominantly paper records. This evident lack of diffusion of information management technologies in the health care sector has limited the tools available for effective decision making from the bedside all the way to the formulation of national health care policy. Given the importance of patient data to the activities of all portions of the health care spectrum, the Institute of Medicine (IOM) undertook a study to improve patient records, acting in response to expanding demands for information and for increased functional capacity of patient record systems, as well as the considerable recent technological advances that bring the benefits of computer-based patient records within reach. As its first step, the IOM study committee examined why previous work had not resulted in widespread improvement of patient records and asked whether and how another effort might be successful. The committee identified five conditions in the current health care environment that increase the likelihood of success. The uses of and legitimate demands for patient data are growing. Part of this growth can be attributed to increased concern about the content and value of clinical therapies and a recent intense focus on health services research.

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--> More powerful, affordable technologies to support computer-based patient records are now available. Increasingly, computers are being accepted as a tool for enhancing efficiency in virtually all facets of everyday life. Demographic factors such as an aging population (which results in a growth in chronic diseases) and the continued mobility of Americans create greater pressures for patient records that can manage large amounts of information and are easily transferable among health care providers. Pressures for reform in health care are growing, and automation of patient records is crucial to achievement of such reform. The combination of these factors led the committee to conclude that computerization can help to improve patient records and that improved patient records and information management of health care data are essential elements of the infrastructure of the nation's health care system. User Needs and System Requirements The patient record of the future will have many more users and uses than it has at present. Direct providers of care (physicians, nurses, dentists, and other health care professionals) will remain the users of highest priority in design considerations. However, with the expanded functions projected for patient records (e.g., their use in supplying data for research or for insurance claims), the range of users considered in record system design will widen. The needs of all users will be met to an extent not possible in current record systems. Ultimately, of course, the most significant beneficiary of improved patient records should be the patient. The committee identified five objectives for future patient record systems. First, future patient records should support patient care and improve its quality. Second, they should enhance the productivity of health care professionals and reduce the administrative costs associated with health care delivery and financing. Third, they should support clinical and health services research. Fourth, they should be able to accommodate future developments in health care technology, policy, management, and finance. Fifth, they must have mechanisms in place to ensure patient data confidentiality at all times. To achieve these objectives, future patient records must be computer-based. However, merely automating the form, content, and procedures of current patient records will perpetuate their deficiencies and will be insufficient to meet emerging user needs. The committee defined the computer-based patient record as an electronic patient record that resides in a system specifically designed to support users through availability of complete and accurate data, practitioner reminders and alerts, clinical decision support

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--> systems, links to bodies of medical knowledge, and other aids. This definition encompasses a broader view of the patient record than is current today, moving from the notion of a location or device for keeping track of patient care events to a resource with much enhanced utility in patient care (including the ability to provide an accurate longitudinal account of care), in management of the health care system, and in extension of knowledge. In the past, a patient record has served the basic function of storing patient data for retrieval by users involved with providing patient care. Even this classic function must be broader in the future, however, especially with respect to the key feature of flexibility. Different health care professionals will require different modes of record information retrieval and display. Today, both paper and computer records are often cumbersome tools for these tasks. The record of the future must be far more flexible, allowing its users to design and utilize reporting formats tailored to their own special needs and to organize and display data in various ways. The patient record system of the future must provide other capabilities as well, including links to administrative, bibliographic, clinical knowledge, and research databases. To meet the needs of clinicians, CPR systems must be linked to decision support systems; they must also support video or picture graphics and must provide electronic mail capability within and between provider settings. Future CPR systems must offer enhanced communications capabilities to meet emerging user needs. The systems must be able to transmit detailed records reliably across substantial distances. Physician offices must be able to communicate with local hospitals and national bibliographic resources. In hospitals, all of the various departmental systems (e.g., finance, laboratory, nursing, radiology) must be able to communicate with the patient record system. In the larger health care environment, computer-based information management systems must be able to communicate with providers, third-party payers, and other health care entities, while at all times maintaining confidentiality of the information. If users are to derive maximum benefits from future patient record systems, they must fulfill four conditions. First, users must have confidence in the data—which implies that the individual who collects data must be able to enter them directly into the system and that the system must be able to reliably integrate data from all sources and accurately retrieve them whenever necessary. Second, they must use the record actively in the clinical process. Third, they must understand that the record is a resource for use beyond direct patient care—for example, to study the effectiveness and efficiency of clinical processes, procedures, and technologies. Fourth, they must be proficient in the use of future computer-based record systems (i.e., the systems described in this report) and the tools that such systems provide (e.g., links to bibliographic databases or clinical decision support systems).

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--> Computer-Based Patient Record Technologies Over the past decades, progress has been steady toward developing complete CPR systems, and several powerful clinical information systems have become operational in recent years. Typically, development of these systems began at least a decade ago, and some have been under development for more than two decades. No current system, however, is capable of supporting the complete CPR. Those clinical information systems that most closely approximate the CPR system envisioned by the committee share several common traits. First, they maintain a large data dictionary to define the contents of their internal CPRs. Second, all patient data recorded in the CPR are tagged with the time and date of the transaction, thus making the CPR a continuous chronological history of the patient's medical care. Third, the systems retrieve and report data in the CPR in a flexible manner. Finally, the systems offer a research tool for using the CPR data. Most of the technological barriers that formerly impeded development of CPR systems have either disappeared already or are about to dissolve. Nevertheless, although no technological breakthroughs are needed to realize CPR systems, further maturation of a few emerging technologies, such as hand-held computers, voice-input or voice-recognition systems, and text-processing systems may be necessary to develop state-of-the-art CPR systems in the 1990s. In some cases, promising technologies must be tested further in ''real-life" situations; in other cases, technologies that have proved beneficial in applications in other fields must be adopted for use in health care. In addition to further development of necessary technologies, a variety of standards must be developed, tested, and implemented before the CPR can realize its full potential at both the macro (e.g., epidemiological) and micro (e.g., physician office) levels. Standards to facilitate the exchange of health care data are needed so that clinical data may be transmitted on networks or aggregated and analyzed to support improved decision making. Standards are also needed for the development of more secure CPR systems. This effort should focus on ensuring the integrity of the clinical data in the CPR and protecting its confidentiality. It is crucial that confidentiality be maintained in CPR systems not only for the patient but also for health care professionals. Nontechnological Barriers In addition to technological advances, successful implementation of CPR systems requires elimination of the barriers to development (i.e., the production of new capabilities) and diffusion. It also requires that the concerns of many interested parties be addressed and that individuals and organizations with resources to support needed changes be engaged in the effort.

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--> Many impediments to the CPR and to CPR systems arise from a lack of awareness and understanding of their capabilities and benefits. The intellectual understanding of what needs to be done, how to do it, and for whom to do it—that is, the demanding collection of insights required for design—is a continuing problem that must be addressed. (For example, when users are asked what capabilities they would like to have available to them, they may have difficulty imagining what CPR systems will be able to do in the future.) System purchasers and users often lack adequate information about the benefits and costs of the CPR. Developers and vendors require more specific information about what users want from systems and what price providers would be willing to pay for systems that meet their needs. Activities aimed at improving and disseminating available information about CPR systems—for instance, through demonstration projects and education programs—constitute an important step toward CPR implementation. Other impediments arise from the lack of an infrastructure to support CPR development and diffusion. Needed infrastructure components are standards for communication of data (i.e., vocabulary control and data format standards); laws and regulations that protect patient privacy but do not inhibit transfer of information to legitimate users of data outside the clinical setting; experts trained in the development and use of CPR systems; institutional, local, regional, and national networks for transmitting CPR data; reimbursement mechanisms that pay for the costs of producing improved patient care information; and a management structure (i.e., an organization) for setting priorities, garnering and allocating resources, and coordinating activities. Consideration of the various barriers to CPR development, the interest and resources of individuals and organizations able to effect change, and the concerns of individuals who would be affected by implementation of CPRs prompted the committee to identify eight critical activities that will help advance CPR development: (1) identification and understanding of CPR design requirements; (2) development of standards; (3) CPR and CPR systems research and development; (4) demonstrations of effectiveness, costs, and benefits of CPR systems; (5) reduction of legal constraints for CPR uses as well as enhancement of legal protection for patients; (6) coordination of resources and support for CPR development and diffusion; (7) coordination of information and resources for secondary patient record databases; and (8) education and training of developers and users. Accomplishing these activities will require adequate funding and effective organization. The committee reviewed organizational structures that could provide the necessary framework for coordinating CPR activities and concluded that no existing organization has the mandate and resources necessary to lead the CPR effort. Thus, for reasons set forth more fully in Chapter 4, the committee believes that a new organization is needed to

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--> BOX 1 SUMMARY OF THE RECOMMENDATIONS OF THE INSTITUTE OF MEDICINE COMMITTEE ON IMPROVING THE PATIENT RECORD The committee recommends the following: Health care professionals and organizations should adopt the computer-based patient record (CPR) as the standard for medical and all other records related to patient care. To accomplish Recommendation No. 1, the public and private sectors should join in establishing a Computer-based Patient Record Institute (CPRI) to promote and facilitate development, implementation, and dissemination of the CPR. Both the public and private sectors should expand support for the CPR and CPR system implementation through research, development, and demonstration projects. Specifically, the committee recommends that Congress authorize and appropriate funds to implement the research and development agenda outlined herein. The committee further recommends that private foundations and vendors fund programs that support and facilitate this research and development agenda. The CPRI should promulgate uniform national standards for data and security to facilitate implementation of the CPR and its secondary databases. The CPRI should review federal and state laws and regulations for the purpose of proposing and promulgating model legislation and regulations to facilitate the implementation and dissemination of the CPR and its secondary databases and to streamline the CPR and CPR systems. The costs of CPR systems be should shared by those who benefit from the value of the CPR. Specifically, the full costs of implementing and operating CPRs and CPR systems should be factored into reimbursement levels or payment schedules of both public and private sector third-party payers. In addition, users of secondary databases should support the costs of creating such databases. Health care professional schools and organizations should enhance educational programs for students and practitioners in the use of computers, CPRs, and CPR systems for patient care, education, and research. support CPR development and implementation. The committee has proposed a framework for the establishment of such an organization, but it also emphasizes that achieving adequate resources for and engaging the appropriate parties in CPR development efforts are more important than the precise structure of the recommended organization. Recommendations The committee believes its recommendations (see Box 1) effectively address the potential barriers to routine CPR use. The first recommendation

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--> defines CPRs and CPR systems as the standard for future patient records; the second proposes an organizational framework within which barriers to CPR implementation can be systematically addressed and overcome. The remaining recommendations focus on specific impediments: needed research and development, promulgation of standards for CPR data and security, review of legal constraints and remedies, distribution of costs for CPR systems, and education of health care professionals. The committee believes that the CPR can play an increasingly important role in the health care environment. This role begins in the care process as the CPR provides patient information when needed and supports clinical decision making. It extends to management of care through the establishment of a mechanism by which quality assurance procedures and clinical practice guidelines are accessible to health care professionals at the time and site of patient care. It also includes opportunities for reducing administrative costs and frustrations associated with health care financing and for capturing administrative data for internal and external review. Finally, the CPR's role extends to capturing relevant, accurate data necessary for provider and consumer education, technology assessment, health services research, and related work concerning the appropriateness, effectiveness, and outcomes of care. The committee recognizes the considerable amount of work that remains to be done and the practical limitations that must be overcome before CPRs become the standard mode of documenting and communicating patient information and before they are perceived and used as a vital resource for improving patient care. The challenge of coordinating CPR development efforts in the pluralistic health care environment is great. Resources are limited and must be used wisely. The committee is convinced that proper coordination and appropriate resources will lead to achievement of the goal of widespread CPR utilization within a decade. The desire to improve the quality of and access to patient data is shared by patients, practitioners, administrators, third-party payers, researchers, and policymakers throughout the nation. CPRs and CPR systems can respond to health care's need for a "central nervous system" to manage the complexities of modern medicine—from patient care to public health to health care policy. In short, the CPR is an essential technology for health care today and in the future.