elatively recent phenomena when compared to other traditional lobbies. Lobbies concerned with taxes, banking, railroads, liquor, oil and gas, forests, transportation, guns and ammunition, industry, tobacco, and shipping, to name but a few, are older, more consistent, and perhaps more sophisticated. The health lobbies have received, until recent years, relatively few funds in comparison with the total dollar magnitude of the health industry, and have been low-key in operation. They have been highly fragmented, often fighting with each other, almost with no ability to look beyond their own special and specific interests of the total health field. This fragmentation of the health lobby is due in large part to the way our health care delivery system is organized, and it does make reasonable solutions to some of the problems exceedingly difficult. In fact, no other major industry in our economy presents so fragmented an approach to the influencing of public policy. For virtually every licensed level of performance, i.e. physicians, nurses, therapists and so on, there is a separate position and thrust on the issues to be decided. Professionally, medicine is organized on a craft basis, in place of an industry wide basis, and as yet no unifying force has appeared which would cause the individual levels involved to speak with one voice. Certainly the organized physicians have received the greatest attention since, as a group, they have poured the greatest resources over the longest the longest period of time into the fray, but the per capita costs per physician to maintain this position of dominance may in the long term be self-defeating. Not only are there several different levels of lobbying input based upon the variety of health manpower classifications and licensure, but also there is a major split between manpower and facilities. Organizations representing facilities, and especially hospitals, have a set of goals often at odds with the major manpower groups. To be sure, many examples can be shown where the two forces have converged to support a given position, but there are enough significant issues of increasing importance to seem to indicate a widening of the breach, such as in the way care should be organized or given, the degree to which services should be facility based, the methods of paying for care. In fact, one of the fears is the dwarfing of the health lobbies in existence by the large health care co-operations and health maintenance organizations. Also another factor provides a major cause for fragmentation of the health lobby. This is the traditional pattern of approaching health problems categorically. Since people usually become ill categorically- i.e. from cancer, respiratory or heart disease, etc.- and not comprehensively, laymen have a tendency to support efforts aimed at diseases with which they can easily identify. This has led to numerous organizations built around a single disease. Each of these organizations, directly or indirectly, constitutes a lobbying force. When they are attempting to influence the government to spend funds for research and services in their special disease areas they tend to compete with each other and may from time to time nullify each other’s actions. There have been times when the argument “my disease is more important than yours” has been used by those interested in budget cutting as justification for cutting or not providing new funds to anyone. In the fragmented field of the health lobby it is exceedingly easy to play one group against the other if your goal is to do nothing. That’s to say, not all lobbies in other fields are unified, but many have found ways to reach agreements on key issues. It might be argued that too much agreement can be as detrimental as no agreement, but at least that would be a novelty in the health field. The late Senator Everett Dirksen of Illinois, one of the Senate’s most eloquent conservatives, used to comment, “nothing can stop an idea whose time has come.” He made this comment about the passage of Medicare, a bill that he had opposed with all of his unusual vigor and effectiveness. Medicare had been supported by several lobbies, most of them from outside the health field. Chief among them was the lobby of organized labor. The bill had been so strongly opposed by organized medicine, with the notable exception of the National Medical Association, the professional organization of black physicians. The fact is that Medicare, which has to be described as one of the most important, if not most important, health measures yet passed by Congress, was passed because of forces outside health-related lobbies. This fact is not often recognized. The lobbying efforts of the Committees for the Aged emphasizing the humane need for care, letter campaigns of various groups demanding that the cost of care of aged parents be lifted from the shoulders of their children who had their own families to protect, church groups, and other civic groups that organized support efforts were all instrumental in their own way in the final favorable vote. But sometimes overlooked are the pressures brought to bear by the local government on the federal government for relief from costs of care that fell on the local property tax when the aged or their children were unable to pay. Costs of care for those over 65 had escalated more rapidly than for any other group and the local government was forced to bear a major portion of this cost. The opportunity to shift a portion of these costs from the local property tax base to a social security insurance base was a deciding factor to congressmen who were increasingly badgered by city and county government lobbyists for such relief. Although the lobbyists for local government maintain a low profile operation, they have become an increasingly important force on the Washington scene.
Hopes and aspirations. Health care throughout the industrialized world, and in the United States in particular, has made some astonishing gains in effectiveness in recent decades through the employment of new medical technologies. The sector has generally been far less progressive in its use of computer and communications technologies, even for such basics as improving traditionally paper intensive processes at the core of operations (National Research Council, 1994). Now this is changing. Health care information technology deployment is proceeding at a rapid pace, with spending estimated at more than$10-15 billion per year (National Research Council, 1997) Goals include: “electronic exchange" of claims information for billing and insurance (for billions of reimbursement claims handled in the US system each year); and transport of individual medical information in "paperless" electronic records (for hundreds of millions of US patients; policy review, outcomes research, population based health studies and public health surveillance, and using data aggregated from computer-resident clinical and administrative information; time computer based decision support tools, replacing paper-based references and guidelines, complementing computerized clinical records, consultations among continuing professional education of providers by video and computer conferencing, and via computer based multimedia tools, health education, home health care "self management" assistance and remote monitoring via telephone, video and computer based tools; and to enhance consumer choice, such as the internet-based data on providers, institutions, and managed care networks.
Information and privacy. Information technology (IT) proponents envision a more efficient, smooth running health care system as a consequence, with better-coordinated care, reduced variation in practice patterns, and lower administrative costs. Skeptics in the "privacy community" have instead focused on the risks to confidentiality posed by increased electronic record keeping. Though disagreeing on how tradeoffs should be made- indeed on what trade offs are possible- all sides concur that legal and policy framework controlling information flows today is severely outdated and represents a 'legal, political and practical mess"(Gellman, 1996). It is now commonplace that, in the United States at least, the biggest information privacy issue in the 1990s will involve healthcare information. Given the incentives inherent in our private, risk-based system of health care finance, and the absence of adequate data protection, legislation, no country presents as unsafe an environment for health data as does the US today. It is well-studied policy territory. In this decade alone, information privacy, confidentiality and security issues have been considered in lengthy reports by among others, the Center for Disease control and prevention (1996), the Department of Health and Human Services (1993,1995), the Institute of Medicine (1991, 1994), the National Institute of Standards and Technology (1994). Yet the weight of these reports has not been sufficient to provide a path to the health care data protection legislation that all agree is necessary. Our system of checks and balances and separate powers requires consensus on the details to move the policy forward, and to date none has emerged on the difficult political, economic and ethical tradeoffs presented by health information issues. The National Information Infrastructure (NII) initiative focuses on enhancing the basic infrastructure for telecommunications and computer technology in all sectors of the US economy. Conceptually, the NII is like a giant web that will allow each user’s computer, telephone, and television to interconnect with others, regardless of their location or the distance between them, and will enable each user to communicate with everyone else who is connected to the web. Over this network, public and private information sources and data processing utilities will be able to transmit, store, process, and display information in many forms and provide information retrieval and processing services on demand, as if connected in the next room. This technology has the potential to revolutionize the way Americans work, learn, shop, and live, by providing them with information when they need it and where they need it, whether in the form of text, data, images, sound, or video. At the outset, health has been identified as one of the sectors that can benefit from NII technology. Thus far, however, NII grants related to health have primarily supported applications of high performance computing and telemedicine to the delivery of medical care to individuals. Relatively little attention has been paid, by either the private or the public sector, to applications that would support population health. As the information infrastructure is built throughout the United States, it is important to ensure that both medical care and public health requirements are addressed. Information technology offers an opportunity to link the health of populations and the medical treatment of individuals more closely, to the benefit of both. The. Public Health Service (PHS) is committed to stimulating a more vigorous participation of the public health community in the NII initiative, and to bringing those involved in the NII and population health together to articulate and realize a collective vision for harnessing the NII in support of the health of the public. Four components of the PHS, the National Library of Medicine (NLM), the Office of the Assistant Secretary for Health (OASH), the Centers for Disease Control and Prevention (CDC), and the Agency for Health Care Policy and Research (AHCPR), jointly sponsored an invitational conference on this topic on April 19, 1995. The following outlines what was discussed at the conference and incorporates the strategic plan developed on April 20. It is for those seeking to learn more about the potential of the NII to improve the health of the public, and to those who can help make these applications a reality.
WHAT IS POPULATION BASED HEALTH?
When most Americans think about the health system, they tend to focus on the diagnosis of disease and medical treatment. But the health of Americans is largely determined by other factors, including genetics, personal risk behaviors, and hazards on the job and in the environment. One important measure of health is the extent to which early deaths are prevented. Various estimates suggest that only about 10% of early deaths in this country can be prevented by medical treatment. By contrast, population-wide public health approaches have the potential to help prevent 70% of these deaths, through measures that target underlying risks, such as tobacco, drug, and alcohol use; diet and secondary lifestyles; and environmental factors.
WHAT IS THE ROLE OF INFORMATION IN POPULATION-BASED HEALTH?
The extent to which population-based public health can achieve its mission depends, in large part, on the availability of accurate, comparable, timely, and complete information. One could say that the collection, analysis, use, and communication of health related information is the quintessential public health service, under girding all others. The three types of information needs, data collection and analysis, communication, support in decision-making, cut across all of the services of public health. Meeting these needs depends not only on a supportive technical infrastructure, but also on personnel with skills to use emerging technologies (both to communicate and to translate complex data into meaningful information), and on a willingness among professionals in different sectors to work together toward common goals.
Data collection and analysis-effective collection, analysis, use, and communication of health related information. Since the client for public health is the community, data are needed not only about people (including their health status, personal risk behaviors and medical treatment), but also potential sources of disease and injury in the environment (such as restaurants, wells, water or sewage treatment plants, worksites, and insects), and available resources that can be mobilized for effective action. These data need to be linked to each other and aggregated geographically, so that it is possible to do such things as detect an incipient epidemic from isolated cases seen by different care providers, relate clinical events with proximate health hazards, and correlate the use and costs of personal health care services with ambient behavioral and environmental risks to health.
HOW IS NII TECHNOLOGY CURRENTLY BEING APPLIED TO POPULATION-BASED PUBLIC HEALTH?
Because those with important roles to play in population health are so diverse; encompassing public health agencies at various levels, health professional and institutions, managed-care plans, public and private organizations, policymakers, and consumers; information systems technology is also needed to educate and empower different groups about public health problems and link them together to take effective action. If the expanding base of available information is to be more a blessing than a curse, these groups will need the means to retrieve, manipulate, and display information so that it can be efficiently put to use for specific health related purposes. It is encouraging that are small number of public health applications have been funded through broad-based NII grant programs in the department of Commerce, (DOC) and the Department of Agriculture (USDA), public health participation in these and other broad-based NII and HPCC grant and contract programs has been modest at best. Thus far the bulk of federal support for population-based applications has come from PHS programs specifically targeted to the public health community.
WHAT BARRIERS NEED TO BE OVERCOME TO MAKE THE VISION OF THE NII AND POPULATION HEALTH A REALITY?
The major barriers that have emerged, above and beyond basic resource constraints and the limited appreciation by both the public and policymakers of the importance of population-based public health, include:
-A lack of nationally uniform policies to protect privacy while permitting critical analytic uses of health data;
-A lack of nationally uniform, multipurpose data standards that meet the needs of diverse groups whom record and use health information.
-Insufficient awareness of the applicability of NII technologies in meeting the information needs of population based public health.
- Organizational and financing issues that make it difficult to integrate information systems or bring potential partners together
Privacy; There is little doubt that the information technology could improve the capacities of communities to carry out the non clinical or population based functions of public health (i.e., services that identify local health problems, prevent epidemics and the spread of disease, protect against environmental hazards and assure the quality and accessibility of health services). Attention to these community wide health services is important because only about 10% of all early deaths in this country can be prevented by medical treatment. Population-based approaches, on the other hand, have the potential to prevent 70% of premature deaths through measures that target underlying risks, the magnitude of social benefits, it is not surprising to find that many advocates of a health information infrastructure simply assume that collection of ever increasing health information, in ever more efficient ways, is inherently a social good. Given the magnitude of the personal costs that can attach to information abuses, and the strong value the US citizens place on privacy, it is also not surprising to find many privacy advocates who are deeply skeptical of health care's information aspirations. Yet progress in medicine, for both personal and public health, has always depended critically on information from and about individuals. It is safe to assume that it will continue to be essential to the evaluation of new technologies and treatments, and to identify and respond to new health threats. Decisions about information policy are therefore critical ones, for both the US population and populations around the world who use leverage the contributions of our biomedical research.
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