Making a Powerful Connection: the Health of the Public and the National Information Infrastructure. 1.0 Executive Summary

07/06/1995

The National Information Infrastructure (NII) initiative focuses on enhancing the basic infrastructure for telecommunications and computer technology in all sectors of the U.S. economy. Conceptually, the NII is like a giant electronic 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.

From the outset, health has been identified as one of the key 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 could improve the capacity of communities to carry out the nonclinical 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 percent 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 percent of premature deaths through measures that target underlying risks, such as tobacco, drug, and alcohol use; diet and sedentary lifestyles; and environmental, occupational, and infectious risk factors.

The extent to which population-based public health can achieve its mission depends, in large part, on the 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 about 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.

Since those with important roles to play in population health are so diverse -- encompassing public health agencies at various levels, health professionals 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 to 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.

There is little doubt that the information needs of population-based public health are well matched with the capabilities of NII technology, and the federal NII initiative can provide the public health community with an opportunity to obtain funding for projects that apply NII technology to population health. However, while it is encouraging that a small number of public health applications have been funded through broad-based NII grants sponsored by the federal interagency High Performance Computing and Communications program, the Department of Commerce, and the Department of Agriculture, public health participation in these programs has been modest at best. Thus far, the bulk of federal support for population-based health applications has come from U.S. Public Health Service (PHS) programs specifically targeted to the public health community.

In April 1995, the PHS sponsored a conference at the National Library of Medicine, during which leaders in the NII and population health communities had an opportunity to come together, explain their work to each other, delineate the barriers that currently discourage application of NII technologies to the information problems of population-based public health, and lay out a comprehensive strategy for moving forward. At this conference, the major barriers that 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, included:

  • 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 the diverse groups who record and use health information;
  • insufficient awareness of the applicability of NII technologies in meeting the information needs of population-based public health;
  • a public health workforce that lacks essential information technology skills; and
  • organizational and financing issues that make it difficult to integrate information systems or bring potential partners together.

Those attending a strategy session following the conference proposed a strategic plan that capitalizes on what a broad range of actors -- state and local public health agencies, federal agencies, professional associations, educational institutions, and other groups -- can do individually and together to overcome these barriers. This plan, which should be viewed as one component of a larger public health information strategy, is designed to:

  • bring the broad public health community together to develop a comprehensive public health information strategy, including a compelling vision (and specific examples) of how NII technologies can improve population health;
  • advance a nationally uniform framework for privacy, data standards, unique identifiers, and data sharing, without which, it is very difficult to implement integrated health information systems;
  • bring public health, health care, research, and informatics groups to the table to ensure that privacy of individually-identifiable health information is protected in ways that permit critical analytic uses of health data, and that standards for health data meet the needs of the diverse groups who collect and use health information;
  • promote the use of information in public health through legislative initiatives (such as Performance Partnership Grants) that foster accountability for improving population health, overcome categorical barriers, and permit states to use federal funds to develop and maintain integrated health information systems;
  • facilitate partnerships between the public health community and other sectors to identify and make progress toward common information goals (including both policy issues and health information systems projects);
  • improve information technology skills among public health professionals through changes in curricula and new approaches to continuing education; and
  • take advantage of all available opportunities to educate the public health and NII communities about the importance of the NII to population health and about information policy issues.

This paper is an important part of that strategy. It is being disseminated widely -- to audiences 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 potential applications a reality.