Effective Information Transfer for Health Care: Quality
Statement of the Problem
This paper addresses two related problems created by the rapid growth of information technology: the loss of productivity due to overload on health care providers, and the loss of privacy. Both occur when excessive amounts of data are transmitted and made available. These issues are jointly related to a trade-off in quality versus quantity of medical information. If quality is lacking, then the introduction of modern communication technology will increase health care costs rather than constrain them.
Background and Problem Description
The online medical record is rapidly becoming a reality. The technology is available and social barriers to acceptance are disappearing. Access to online patient data during a treatment episode will become routinely accepted and expected by the patient as well as by the provider. The image of an expert, in the popular view, is now associated with a computer screen in the foreground, and medical experts are increasingly being included in that view. Eventually, online validation of health care information may become mandatory. A recent court case involving a physician who had failed to use available information technology to gather candidate diagnoses was decided in favor of the plaintiff 1R, presaging new criteria for commonly accepted standards of care.
The rapid growth of the Internet, the improved accessibility of online libraries, and online medical records all provide huge increases in potential information for health care providers and medical researchers. However, most beneficial information is hidden in a huge volume of data, from which it is not easily extracted. Although the medical literature, largely through the efforts of the National Library of Medicine, is better indexed than literature in any other scientific field 2R, the volume of publications, the difficulty of assessing the significance of reports, inconsistencies in terminology, and measures to protect the privacy of patients all place new barriers on effective use and result in what is sometimes called information overload. This overload means that diligent research for any case can require an open-ended effort, likely consuming many hours. We consider that the current and imminent presentation of information is of inadequate quality to serve the practice of health care.
Unfortunately, the pace of development of software to provide services that deal effectively with excessive, convoluted, heterogeneous, and complex data is slow. Since the problem in the preceding years has always been access, there is a lack of paradigms to deal with the issues that arise now. Before, when voluminous medical data had to be processed, intermediate staff was employed, so that the health care provider was protected both in terms of load and responsibility. Staff at research sites filtered and digested experimental results. Staff at pharmaceutical companies filtered for benefits and effectiveness. Government agencies monitored lengthy trials. Publishers required refereeing and editing. Students and interns discussed new reports in journal clubs. Collegial interactions provided hints and validations. But our networks encourage disengagement of intermediaries, and while most of the intermediate filtering tasks are aided by computer-based tools, there is no common paradigm that ensures the quality of information products.
Assessing the demands placed on the national information infrastructure by health care services requires considering the needs of the health care providers and their intermediaries. This analysis is thus based on customer pull rather than on technology push. This approach is likely to lead to lower estimates than would a model focusing on technological capabilities. However, we will assume a progressive environment, where much paper has been displaced by the technologies that are on our horizon.
In our model, information requests are initially generated for the delivery of health care by the providers and their intermediaries. Pharmacies and laboratories are important nodes in the health care delivery system. Education for providers and patients is crucial as well and will be affected by the new technologies. Managers of health care facilities have their needs as well, paralleled at a broader level by the needs of public health agencies. Functions such as the publication of medical literature and the production of therapeutics are not covered here, since we expect that topics such as digital libraries and manufacturing in this report will do justice to those areas.
Services for the Health Care Provider
The initial point in our model is the interaction of the provider with the patient. Such an interaction may be the initial encounter, where tradition demands a thorough workup and recording of physical findings; it may be a visit motivated by a problem, where diagnostic expertise is at a premium; it may be an emergency, perhaps due to trauma, where the problem may be obvious but the treatment less so; or it may be a more routine follow-up visit. In practice, the majority of visits fall into this routine category.
Adequate follow-up is crucial to health care effectiveness and is an area where information technology has much to offer. Having the right data at hand permits the charting of progress, as well as the therapeutic adjustments needed to improve or maintain the patient's health care status. Follow-up care is mainly provided locally. The majority of the consumers of such care are the older, less mobile population. It is this population that has the more complex, longer-term illnesses that require more information
The needs for information differ for each of the interactions described above. Initial workups mainly produce data. The diagnostic encounter has the greatest access demands. Emergency trauma care may require some crucial information, but it is rarely available, so that reliance is placed on tests and asking the patient or relatives for information. Note that many visits to emergency facilities, especially in urban settings, are made to obtain routine care, because of the absence of accessible clinical services. For our analysis these are recategorized. A goal for health care modernization should be better allocation of resources to points of need, but here we discuss only the information needs. Information for follow-up visits should summarize the patient's history; unexpected findings will trigger a diagnostic routine.
To assess the need for data transmission we need to look at both the distance and the media likely to carry the needed information. Media differ greatly, and all must be supported. Many physical findings can be described compactly with text. Laboratory findings are compactly represented in numeric form. Sensor-based tests, such as EKGs and EEGs, are time series, requiring some, but still modest, data volumes. Sonograms can be voluminous. The results of ultrasound scans are often presented as images. Other diagnostic procedures often produce images directly, such as x-ray or CT and similar scans that are digitally represented. High-quality x-rays require much storage and transmission capacity, whereas most digital images have larger pixels or voxels and require more modest storage volumes. The practitioner typically relies on intermediate specialists to interpret the data obtained from sensors and images, although for validation access to the source material is also wanted.
The distance that this information has to travel depends both on setting and data source. Table 1 indicates estimated sources of patient care information for the types of clinical encounters listed.
We conclude that use of local patient care information dominates. The requirement for remote transmission of data for individual patient care is modest. Instances will be important, as when a traumatic accident requires emergency care and consultation with an expert specialist in a remote locale. Here again, quality considerations will be crucial. It will be important to obtain the right data rapidly, rather than getting and searching through tomes of information. At times images may be required as well. Most x-rays will be done locally, although one can construct a scenario in which an archived image is of value. Any actual medical intervention will be controlled by local insight and information.
In addition to requirements for access to and display of individual data, as shown in Table 1, there is a need for online access to the literature and reference material. Here issues of locality are best driven by economic considerations. If the volume and frequency of use are high, then the best site for access will be relatively local; if they are low, the site can be remote as long as access is easy and latency is small. These parameters are under technological control, and no prior assumptions need be made except that reasonable alternatives will survive and unreasonable ones will not.
Management and Public Health Needs
The requirements of broad health care information for planning and research are significant. Local institutions must improve the use of the data they have in-house already for better planning. New treatments must be monitored to enable rapid detection of unexpected side effects. Public health officials must understand where problems exist, what problems can be addressed within their means, and what recommendations for public investment are sound.
Today effective use of available health care data is difficult. Standards are few and superficial. For instance, the HL-7 standard does not mandate any consistency of content among institutions; only the format of the access is specified. The data collections themselves also are suspect. Private physicians have few reporting requirements, except for some listed infectious diseases. If the disease is embarrassing, then their concern for the patient's privacy is likely to cause underreporting, because they have little reason to trust that privacy will be maintained in the data systems. In a group practice, the medical record will be shared and potentially accessible, but the group's motivations differ little from those of an individual physician. Physicians working in a larger enterprise, such as a health maintenance organization (HMO), will have more requirements placed on them by administrators who are anxious to have adequate records. Still, there is little guarantee today that data are complete and unbiased. The local users are able to deal with the uncertainty of mixed-quality data, since they understand the environment. Remote and integrated analysis is less likely to be able to use local data resources, even when access is granted.
However, clinical data collection and use is an area where change is occurring. The increasing penetration of HMOs, the acceptance of online access, and the entry of local data provide the foundation. When the local information feedback loops are closed and providers see at the next encounter what information they collected, then quality can improve. Sharing one's record with colleagues also provides an inducement to record the patient's state completely and accurately. As the record becomes more complete, questions of rights to access will gain in importance.
Clinical data collection is broad, but rarely sufficiently deep to answer research questions. Where clinicians collect data for their own research the quality of the variables they consider crucial will be high, but the scope of most studies is narrow and not comparable among studies and institutions. Funded, multi-institutional research studies make valiant efforts to maintain consistency but rarely succeed on a broad scale. Although such data will be adequate to answer focused research questions, little management or public health information can be reliably extracted.
Many funded health care and service programs mandate reporting and data collection. But, again, there is likely to be a narrow bias in collection, recording, and quality control, and, except for administrative purposes, the value is minimal. Biases accrue because of the desire to justify the operation of the clinics and services, and, if the data lead to funding, such biases are strengthened. Public health agencies are well aware of these problems and therefore tend to fund new research studies or surveys rather than rely on existing data collections.
Quality again seems to be the main constraining factor. How can quality be improved? Quality will not be improved by mandating increased transfer of data to remote sites. The only option seems to be to share data that are used locally, and to abstract management and public health information from such local data. Feedback at all levels is crucial, not only from encounter to encounter, but also in the comparison of intervals between treatments in a patient's history (especially for aged individuals), among similar patients, and among physicians using different approaches to practice. Again, it is the actual consumers of the information that need to be empowered first.
The desire to have all possible information will be moderated by the effort and time that health care providers must spend to obtain and record it. Eventually, intelligent software will emerge that can help select, extract, summarize, and abstract the relevant and properly authorized information from voluminous medical records and bibliographic resources. Such software will be accepted by the providers to the extent that its results accord with those experienced in their human interactions and aid their productivity.
We see that the demands for national information infrastructure (NII) services are more in making software available and providing interoperation standards than in providing high-performance and remote communication. Today, access is constrained by problems of interoperation, concern for privacy, and the poor quality of many collections. The effort needed to overcome these barriers is major and will take time to resolve.
The need for continuing education has been more formally recognized in the health care field than in most other areas. Although unmotivated engineers can spend many years doing routine corporate work until they find themselves without marketable skills, the health care professional is faced with medical recertification, hospital admit privileges, and the need to maintain credibility. In urban areas the patient's choices are many and are often based on contacts leading to referrals. All these factors motivate continuing education. The quality of such education is decidedly mixed. Boondoggles are common, and testing for proficiency of what has been learned is minimal or absent. Few standards exist.
In this instance, access to remote instructors and experts can be a boon. For the rural practitioner, who finds it difficult to leave the practice area, such services are especially beneficial. In urban areas, most educational services will be local. The demand on the NII is again difficult to gauge but may again be modest in the aggregate: Fewer than 10 percent of our health care providers practice in remote areas. Spending a few hours a week on remotely accessed educational services seems to be an outer limit. The services should be fast and of high quality. Since time is not of the essence, the service has to compete with printed material, where it will be
difficult, if not impossible, to match image quality. On the other hand, dynamic interaction has a role and can provide excitement.
There are natural limits to the capabilities of humans to take in information. The rate provided on a television screen is one indication of these limits; few people can watch multiple screens beneficially, although the actual information content in a video sequence is not high. The script for an hour's TV episode is perhaps 200 sparsely typewritten pages, but the story is exciting to watch, and that has added value. Only a few paths are reasonable at any point in time, and the choice of paths represents the essential information. Excessive randomness of events, MTV style, is unlikely to be informative. Eventually, the information retained after an hour of educational video is likely to be even less than that of the script provided.
Technology will allow interaction in the educational process, just as now some choices can be made when reading a book or browsing in a library. Again, the number of choices at each point is limited, probably to the magical number 7 ± 2, the capacity of the interactor's short-term memory 3REffective educational systems must keep the learner's capabilities in mind. To what extent intermediate representations expand the material and place higher demands on network bandwidth is unclear.
The essence of providing information is decision support. All tasks, whether for the physician treating a patient, the manager making investment decisions, the public health official recommending strategies, and even the billing clerk collecting an overdue payment, can be carried out effectively only if the choices are clear. The choices will differ depending on the setting. The manager must give more weight to the financial health of the enterprise than does the physician recommending a treatment.
Customer-based capacity limits can be imposed on all service types provided by the information enterprise, just as we sketched in the section on education. Making choices is best supported by systems that provide a limited number of relevant choices. The same magical number (7±2) raises its head again. To reduce the volume of data to such simple presentations means that processing modules, which fulfill the roles of intermediaries in the health care enterprise, must be able to locate likely sources and select the relevant data. Even the relevant data will be excessive. Long patient histories must be summarized 4R. Similar patient courses can be compared, after matching of the courses based on events in patient records, such as critical symptoms, treatments applied, and outcomes obtained. It is rare that local patient populations are sufficient, and so matching has to be performed with information integrated from multiple sites, taking environment into account.
The presentation to the customer must be clear and must allow for explanations and clarifications. Sources of data have to be identifiable, so that their suitability and reliability can be assessed. Once such services are provided, it will be easier to close the feedback loops that in turn encourage quality data. Having quality data enables sharing and effective use of the technological infrastructure being assembled.
Education and entertainment benefit from a mass market, and so the expansion of information into exciting sequences has a payoff in acceptance and markets. That payoff is much smaller for the review of medical records and the analysis of disease and treatment patterns. The volume of health care information transmitted for decision support will be constrained by the filtering imposed by quality control.
Protection of Privacy
The public is distrustful of the protection of privacy provided for health care data, and rightly so. In many cases, to receive health care services and insurance reimbursement, patients have to sign broad releases. Once they do, their medical information flows, with nary a filter, to the organization's billing clerks, to the insurance companies, and (in case of a conflict) to legal professionals. Although all these people have ethical constraints on the release of information, little formal guidance and even fewer formal restrictions are in place. In the paper world, loss of privacy was mainly an individual concern, as in the case of the potential embarrassment
to a politician when the existence of a psychiatric record was revealed. In the electronic world, the potential for mischief is multiplied, since broad-based searches become feasible.
The insurance companies share medical information through the Medical Information Bureau. This port is assumed be a major leak of private information. Unless it can be convincingly plugged, it is likely that health care enterprises will have to limit access to their data if they want to (or are forced to) protect the patient's rights to privacy. Many health care institutions, after having appointed a chief information officer (CIO) in the past decade, are now also appointing a security officer. Without guidelines and tools, such an officer will probably further restrict access, perhaps interfering with the legitimate requests of public health officials. It is unclear how such officials will deal with leaks to insurance companies and their own billing staff.
Legitimate concern for the protection of privacy is likely to hinder use of the information infrastructure. We do believe that there are technological tools that can be provided to security officers and CIOs to make their task feasible 5R. To enable the use of information management tools, the information flow within major sectors of the health care enterprise has to be understood. The value and cost of information to the institution, its major components, and its correspondents has to be assessed. Without control of quality the benefits are hard to determine, and it will be difficult to make the proper investments.
Quality and privacy concerns are likely to differ among areas. That means that those areas must be properly defined. Once an area is defined, access rules can be provided to the security officer. A barrier must be placed in the information flow if access is to be restricted. Such a barrier is best implemented as a system module or workstation owned by the security officer. That node (a security mediator consisting of software and its owner) is then the focus of access requests, their legitimacy, and their correct response. The security mediator must be trusted by the health care staff not to release private information and must also be trusted by the customers (be they public health officials, insurance providers, or billing staff) to provide complete information within the bounds of the rules provided.
The volume of data being transmitted out of the health care institution may be less, but the resulting information should be more valuable and trustworthy.
The sources and uses of health care information are varied. Technological capacities and capabilities are rapidly increasing. The informational needs of the health care enterprise can be defined and categorized. If quality information can be provided, where quality encompasses relevance, completeness, and legitimacy, then the demands in the NII can be estimated, and it appears that the overall capabilities are likely to be adequate. Distribution, such as access in rural areas, is still an open question. I have recommended elsewhere that the Rural Electrification Services Authority (REA) repeat its success of the 1930s by focusing on the provision of information access to the same customers.
The major point to be made is that, in order to provide health care professionals with the best means for decision making, a reasoned balance of software and hardware investments is appropriate. Software provides the means to abstract voluminous information into decision sequences where, at every instant, the customer is not overloaded. There is an optimal trajectory in balancing investments in the systems infrastructure versus software application support, but we have not spent much effort in understanding it. For health care providers the benefits are to be found in the quality of informationit must be good enough, sufficiently complete, and relevant enough to aid decisionmaking. If the quality is absent, then the effort will be poorly rewarded and the risks of failure will be high. The recommendation from this point of view is therefore to move support to the information processing infrastructure, so that relevant applications can be built easily and the customers satisfied. A happy customer will in turn support the goals of the NII.
An area where government support can be crucial is in helping to define and validate standards. Standards setting is best performed by customers and providers, but the validation and dissemination of standards are precompetitive efforts that take much time and have few academic rewards. Academic insights can help ensure coherence and scalability. Tests performed outside vendor locations are more likely to be trusted and are easier to demonstrate. Infrastructure software, once validated, is easy to disseminate but is hard to market until
the application suites that build on the infrastructure are available. The need to support the communications hardware infrastructure has been recognized. The support of software in that role may well be simpler, since its replication is nearly free.
The desired balance for health information infrastructure support can be replicated in all fields of information technology. We expect the parameters to differ for commerce, defense, education, entertainment, and manufacturing. The common principle we advocate is that, as we move from a supply-limited to a demand-constrained information world, our analysis and actual service methods must change.
 Harbeson v. Parke Davis, 746 F.2d 517 (9th Cir. 1984).
 Wiederhold, Gio. 1995. ''Digital Libraries," Communications of the ACM, April.
 George Miller.
 Isabelle de Zegher-Geets et al. 1988. "Summarization and Display of On-Line Medical Records," M.D./Computing 5(3):38–46.
 Willis Ware, "The New Faces of Privacy," P-7831, RAND Corporation, 1994.