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Making a Powerful Connection: The Health of the Public and the National Information Infrastructure

Report of the U.S. Public Health Service
Public Health Data Policy Coordinating Committee
(July 6, 1995)
Prepared by:
Roz D. Lasker, M.D.
Deputy Assistant Secretary for Health (Policy Development)
Office of the Assistant Secretary for Health
Betsy L. Humphreys, M.L.S.
Assistant Director for Health Services Research Information
National Library of Medicine
William R. Braithwaite, M.D., Ph.D.
Senior Advisor for Information Policy
Office of the Assistant Secretary for Health

TABLE OF CONTENTS

1.0 EXECUTIVE SUMMARY

2.0 INTRODUCTION

3.0 WHAT IS POPULATION-BASED PUBLIC HEALTH?

4.0 WHAT IS THE ROLE OF INFORMATION IN POPULATION-BASED PUBLIC HEALTH?
4.1. Data Collection and Analysis
4.2. Communication
4.3. Support in Decisionmaking

5.0 WHAT ARE THE GENERIC CAPABILITIES OF NII TECHNOLOGY?

6.0 HOW CAN THE NII SUPPORT POPULATION HEALTH IN THE FUTURE?
6.1. Scenario 1: Automatic Warnings Stop City Epidemic
6.2. Scenario 2: Multimedia Public Action Campaign Reduces Deaths Due to SIDS
6.3. Scenario 3: On-Line Statistical Displays Make Health Matter for Policymakers
6.4. Scenario 4: In-Home Workstation Helps Family Take Preventive Action
6.5. Scenario 5: Geographic Information System Guides Flood Emergency Response
6.6. Scenario 6: International Database Speeds Diagnosis and Treatment of Drug-Resistant Pneumonia
6.7. Scenario 7: National Toxic Release Inventory Aids Local Environmental Impact Analysis
6.8. Scenario 8: Digital Camera Speeds Diagnosis of Contaminated Well
6 .9. Scenario 9: Multimedia Data Transfer Supports Long-Distance Entomology
6.10 Scenario 10: Commuting to School on the Information Superhighway

7.0 HOW IS NII TECHNOLOGY CURRENTLY BEING APPLIED TO POPULATION-BASED PUBLIC HEALTH?
7.1. Broad-based Federal NII Grant Programs
7.2. Public Health Service Activities
7.2.1. Office of the Assistant Secretary for Health
7.2.2. National Library of Medicine
7.2.3. Agency for Health Care Policy and Research
7.2.4. Centers for Disease Control and Prevention
7.3. State Activities

8.0 WHAT BARRIERS NEED TO BE OVERCOME TO MAKE THE VISION OF THE NII AND POPULATION HEALTH A REALITY?
8.1. Privacy
8.2. Health Data Standards
8.3. Awareness of NII Applicability
8.4. Workforce Training
8.5. Organizational and Financing Issues

9.0 STRATEGY FOR EXPANDING PUBLIC HEALTH APPLICATIONS OF THE NII
9.1. State and Local Public Health Agencies
9.2. Federal Agencies
9.3. Professional Public Health Associations
9.4. Professional Associations (Health Care and Informatics)
9.5. Schools of Public Health

10.0 REFERENCES

11.0 APPENDIX 1: PARTICIPANTS IN THE APRIL 20, 1995 STRATEGY SESSION

12.0 APPENDIX 2: SOURCES OF ADDITIONAL INFORMATION

1.0 EXECUTIVE SUMMARY

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.

2.0 INTRODUCTION

The NII initiative focuses on enhancing the basic infrastructure for telecommunications and computer technology in all sectors of the U.S. economy. It encompasses economic and regulatory policies to encourage private investment in the NII as well as federal grant funding. From the outset, health has been identified as one of the key sectors that can benefit from better information technology (1). 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 (2). 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 PHS is committed to stimulating 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 and a smaller strategy session on the following day. A first draft of this paper was distributed to those attending the conference to provide a common basis for discussing the NII and public health. This version outlines the issues that were brought up and discussed at the conference and incorporates the strategic plan that was developed on April 20. It is being disseminated widely, both 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.

3.0 WHAT IS POPULATION-BASED PUBLIC 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 human biology, 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 percent of all 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 percent of these deaths, through measures that target underlying risks, such as tobacco, drug, and alcohol use; diet and sedentary lifestyles; and environmental factors (3)

.

Over the past 200 years, major advances in the health and longevity of the American people have resulted from public health interventions designed to reduce or eliminate significant threats to the health of communities. Examples include the creation of safe water and sewage disposal systems, the control of disease-bearing insects and rodents, immunization of the population, the identification and rapid control of disease outbreaks, and the establishment and enforcement of safe food processing and handling practices. In an era of global drug-resistant diseases, complex environmental exposures, and new insight into the ways that genetics and lifestyle choices contribute to disease and disability, the public health mission -- to identify and address community health problems -- becomes more difficult and more critical.

In spite of the importance of population-based public health services, years of neglect are compromising the capability of many communities in the United States to provide them. Most providers and consumers think of the public health system only in terms of providing medical services to the poor. Few have a clear understanding of the population-based (i.e., nonclinical) functions that national, state, and local public health agencies perform or how these functions support them. Realizing the potential of population-based interventions to protect and improve health requires that policymakers and the public have a clearer understanding of who is involved in public health, what they do, and the benefits that result from their actions. Only then can the types of resources that public health needs -- including information technology -- be appreciated and addressed.

Because public health focuses on promoting healthy people in healthy communities, those with important roles to play encompass not only public health agencies at various levels, but also a broad range of individuals; health professionals and institutions; and public and private organizations. Working together, these parties prevent epidemics and the spread of disease, protect against environmental hazards, prevent injuries, promote and encourage healthy behaviors and mental health, respond to disasters and assist communities in recovery, and assure the quality and accessibility of health services. To accomplish these ends, the public health community needs to carry out the following essential services (4):

  • monitor health status to identify community health problems;
  • diagnose and investigate health problems and health hazards in the community;
  • inform, educate, and empower people about health issues;
  • mobilize community partnerships to identify and solve health problems;
  • develop policies and plans that support individual and community health efforts;
  • enforce laws and regulations that protect health and ensure safety;
  • link people to needed personal health services and assure the provision of health care when otherwise unavailable;
  • assure a competent public health and personal health care workforce;
  • evaluate the effectiveness, accessibility, and quality of personal and population-based health services; and
  • conduct research to identify new insights and innovative solutions to health problems.

As the health care system increasingly shifts towards a population-based focus, the interests of public health and the health care sector are beginning to converge. With the growth of managed-care plans responsible for defined populations of enrollees, and the emergence of health plan "report cards", the health care system is becoming a more suitable vehicle for achieving certain public health objectives (such as the delivery of clinical preventive services). With payments based on capitation, health plans have an incentive to care about population health because they benefit financially to the extent that either they or the public health system keep their enrollees healthy. And with managed-care plans taking over the care of vulnerable populations, such as Medicaid beneficiaries, public health agencies are becoming responsible for assuring that the enrollees of these plans receive appropriate services. As both the interests and populations-of-interest in these two sectors converge, there is a real opportunity to integrate health promotion and disease prevention into health care delivery. To move in this direction, health care organizations and the public health community will need to coordinate not only their roles and responsibilities, but also their information systems.

4.0 WHAT IS THE ROLE OF INFORMATION IN POPULATION-BASED PUBLIC HEALTH?

The extent to which public health achieves its mission depends, in large part, on the availability of accurate, comparable, timely, and complete information. In fact, one could say that the collection, analysis, use, and communication of health-related information is the quintessential public health service, undergirding all others. The three types of information needs outlined below cut across all of the essential services of public health. Meeting these needs depends not only on a supportive technical infrastructure, but also on personnel with the 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.

4.1 Data Collection and Analysis

Monitoring health status and environmental quality, diagnosing and investigating health problems and hazards, and evaluating the accessibility and effectiveness of clinical and population-based health services all require sophisticated data collection, linkage, and analysis. 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. Ultimately, 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.

Data for these purposes come from a wide variety of sources. Currently, public health predominantly relies on seven types of data to meet its needs: vital statistics; health care utilization data; practitioner registries; disease and injury registries; disease, injury, and behavioral risk factor surveillance systems; periodic surveys; and programmatic data systems. Individually, some of these data sources are among the best in the world. But viewed as a whole, problems with fragmentation, lack of standardization, episodic data collection -- and the fact that data for public health purposes are often collected separately and redundantly from encounter data in the medical treatment system -- have exacerbated the burden and costs of collecting data, limited the linkability and usefulness of the data that are collected, and resulted in critical data gaps.

The development of logically integrated health information systems, in which information collected once can serve multiple purposes, has the potential to overcome some of these problems. Realizing this potential will require:

  • a standardized, multipurpose nomenclature for all health concepts;
  • uniform standards for electronic data transmission;
  • unique identifiers for all "units" of interest, including individuals, providers, worksites, restaurants, wells, etc.
  • a secure environment for transmitting, linking, and anonymizing data;
  • strong privacy protections; and
  • appropriate data sharing policies.

Not surprisingly, these same factors are also prerequisites for effective computer-based patient record systems.

4.2 Communication

Whether it be through written text, video, radio, e-mail, telephone hotlines, clearinghouses, or other information resources, communication is the sine qua non for informing, educating, and empowering people about public health problems and health issues in general. The targets for public health communications are quite diverse. For example, consumers need to know about personal behaviors that pose risks to health, and where to find services that can support difficult changes in lifestyle. Potential communicable disease contacts need to be informed about risks so that they can seek out diagnosis and treatment. Practitioners need to be alerted to emerging infectious and environmental threats to health so that they can target preventive, diagnostic, and therapeutic services. And the media needs to learn about health problems in the community so that they, in turn, can publish the facts for wider distribution.

Types of communication that actively link people together are also integral to public health. For instance, effective actions to limit the spread of disease, to respond to disasters, or to minimize the risk of injury or death require the ability to communicate information rapidly to many people at diverse sites. Developing workable strategies for addressing community health problems requires systematic ongoing communication and collaboration among widely scattered public health officials, health care providers, elected officials, employers, community organizations, and fire, rescue, law enforcement, social services, school, and library personnel. Addressing problems in remote areas often requires consultation with off- site specialists, such as epidemiologists, civil engineers, or entomologists. The challenges of keeping up-to-date with advances in public health increasingly demand the availability of long-distance learning ("schools without walls").

4.3 Support in Decisionmaking

Information is a prerequisite for public health, but it may be perceived more as a curse than a blessing if the expanding base of available information cannot easily be put to use for a specific purpose. Virtually all essential public health services depend on ready access to information about what is known about a particular public health problem and who is doing what in a particular community. For example, diagnosing the cause of an outbreak (such as the recent release of nerve gas in the Tokyo subway system) and identifying effective interventions requires a fast, targeted review of the research literature, identification of available resources and experts, and application of what is known generally to the features of a particular situation. Practitioners in both the public and private sectors as well as managers of health care organizations need efficient access to the latest disease and disability prevention guidelines and ways to apply them to their patients and populations. Consumers also need help in comprehending the public health literature, not only to obtain information relevant to their individual needs, but also to sort fact from fiction, and to identify local support services that can help them take effective action.

Sophisticated tools for displaying and manipulating data are also important in public health, especially for essential services that depend on seeing a pattern in rare events or applying what is known generally to a small region or subpopulation. For instance, the recent Hantavirus outbreak was diagnosed through a CDC medical examiner surveillance database, which showed a clustering of similar deaths among young people in the Four Corners area of the Southwest United States. In situations such as food poisoning, environmental contamination, and water-borne illness, geographic displays of data can visibly target the likely source of widespread incidents and, by identifying what is available in and near the source area, promote efficient deployment of resources. Modeling and simulation techniques can extend the usefulness of available data by extrapolating what is known about one geographic area or one population to others for which primary data are not available. In addition, specially-designed displays can make information about public health problems and resources meaningful to those outside of the field of public health. This can be critical for policymakers, who need to make increasingly difficult decisions about public health capacity in times of tightening budgets and "downsized" government.

5.0 WHAT ARE THE GENERIC CAPABILITIES OF NII TECHNOLOGY?

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 (such as data, voice, and images) and provide information retrieval and processing services on demand, as if connected in the next room.

Technically, the NII is the logical convergence of computer hardware, software, and networking technologies made possible by the increasing digitization of text, sound and images. The basic technologies underpinning the NII include very high speed computers and communications; software tools that help users navigate among the huge array of services available on the computer systems connected by the network; and information appliances, such as telephones, televisions, and multimedia workstations that allow users to access the network. Many of these technologies are being developed under the auspices of the federal interagency High Performance Computing and Communications (HPCC) program (5). Information generated through the various appliances -- whether it relates to patients, restaurants, or water sample data -- is all the same when converted to digital bits for transmission, switching, and processing.

NII technology has great potential for meeting the information needs of population-based public health. The rapid, transparent connectivity of the NII is well suited to facilitate the communication of data, voice, or high-resolution visual images. This not only can improve the speed, reliability and efficiency of keeping people informed, it can also facilitate collaborative management, and support such activities as long-distance learning.

The NII can also provide the necessary infrastructure to develop integrated databases, support analyses of these data, and make better use of data. As a gateway, the NII enables a computer in one location, with the appropriate authorization, to query information collected by others, vastly increasing the range of knowledge readily available at a given location. If all of the systems involved in the network collect data using a common vocabulary, aggregating data collected for different purposes becomes practical, and the burden of recoding and resubmitting similar information to fulfill additional requirements is reduced.

As geography and communications are removed as barriers, it is thought that the NII will function as a global marketplace to encourage the development and dissemination of a wide variety of affordable information processing services. Some of these services will be image enhancement, data manipulation, and analytic tools. Others will facilitate guided interactions with knowledge bases, through such mechanisms as interactive retrieval and expert systems. While it is clear that the NII has great potential to support data collection and analysis, communication, and decision support for public health, effective use of the technology will be dependent on multiple factors, including the availability of information; uniform standards for data elements and electronic transmission; tailored software that allows users to obtain access to and manipulate health information; policies to protect the privacy and security of information; and a well-trained workforce to create the information, develop applications, construct facilities, and train others to benefit from its potential.

6.0 HOW CAN THE NII SUPPORT POPULATION HEALTH IN THE FUTURE?

Imagine the year 2010, when all health-related agencies and organizations are connected to the NII, as are all schools, universities, libraries, businesses, and the majority of homes in the United States. Electronic mail (e-mail) and teleconferencing are common methods of communication among those concerned with improving and protecting the health of communities. Most data needed to identify and assess community health problems are in electronically accessible form. The majority of available health-related data and information is generated automatically, as a by-product of delivering and paying for medical care and carrying out essential public health services. Public health officials use an array of sophisticated technologies to link, aggregate, analyze, and scan available data to detect changes in community health status and emerging health problems. Reminder systems and decision support tools assist in identifying problems and taking appropriate actions. Because collecting and analyzing data are less labor-intensive, more time can be spent on devising solutions to high priority community health problems. Information technology helps diverse community groups collaborate on practical strategies for reducing health risks. Disease prevention and health promotion information is readily available to citizens in schools, libraries, kiosks, and homes.

The scenarios that follow illustrate various ways that NII technology could be harnessed to improve the health of the public.

6.1 Scenario 1: Automatic Warnings Stop City Epidemic

Each month, a number of people are seen in doctor's offices and emergency rooms across the city with severe diarrhea and vomiting. One month, however, pattern detection software running on the patient database for a large managed-care plan picks up a significant increase in the incidence of this type of gastrointestinal disturbance. The software automatically generates a message to the city health department, providing summary statistics by street and zip code about the residence of affected patients. Almost simultaneously, an algorithm built into the inventory control system for one of the largest supermarket chains in the metropolitan area identifies an unusually large number of sales of anti-emetics and anti-diarrheals in one part of the city and sends an automatic alert to the city public health department, identifying the addresses of the stores involved.

The city public health department investigates the problem using geographical overlay plots of the addresses of patients and stores and the distribution of known sources of infection from the city Geographic Information System (GIS), which characterizes residents, roads, and public works in different parts of the city. This system reveals that 63 percent of the patients were served by a common water treatment plant. Public health officials are immediately dispatched to investigate the plant, where they identify and resolve the problems: a clogged chlorine additive tube and an inattentive plant manager. A wider look at the plant and its environment identifies an upstream sewage treatment plant which has had overflow problems. While appropriate experts are dispatched to investigate the sewage plant, electronic alerts are sent to clinicians in the area, directing them to collect appropriate samples for analysis, and suggesting effective treatment procedures. The epidemic abates after a week. Later, the lab reports the results of its analysis, describing a previously unknown vibrio virus as the causative agent, with the sewage plant as its probable source.

6.2 Scenario 2: Multimedia Public Action Campaign Reduces Deaths Due to SIDS

A state public health official is comparing the most recent data on deaths due to sudden infant death syndrome (SIDS) in his state with data that has systematically been added to the state database during the previous year. During that period, the public health department initiated a special campaign to educate hospital officials, health professionals, and new parents on the importance of infant sleep position in reducing SIDS. Working through the Internet, a task force representing health professional groups, managed-care plans, hospitals, public libraries, and community service organizations developed and implemented a comprehensive state-wide plan. Multimedia bulletins were developed and made available through the Internet summarizing the results of research implicating sleep position in SIDS and illustrating correct and incorrect sleep positions. Long-distance learning programs focusing on sleep position and SIDS were established for health professionals. Modules on sleep position were added to interactive videodiscs prepared for parents taking infants home from the hospital and coming in for well child care visits.

The graphically displayed data for the past two years indicate that the campaign has been successful in reducing in-hospital SIDS, even when the appropriate adjustment is made for reductions in the time infants spend in hospitals after birth. In-home SIDS has also been reduced in most parts of the state. Linking the SIDS data to other state-wide information resources, the state public health official explores several possible explanations for the lack of reduction in in-home SIDS in certain jurisdictions, such as language barriers (the SIDS educational material was produced in English and Spanish only), and less frequent visits to clinicians providing reminders. Since the incidence of SIDS is higher in jurisdictions with a lower percentage of immunized babies, this latter explanation seems plausible. The task force is reactivated with additional members from the identified communities to target interventions in these areas.

6.3 Scenario 3: On-Line Statistical Displays Make Health Matter for Policymakers

In preparation for a strategic health policy meeting with the governor, the state health official and the governor's chief social services advisor call up the health policy decision support system to generate a number of on-line reports from the state's integrated health information system. Today, they are interested in: (a) the top 25 health problems in the state based on numbers of affected citizens and incurred costs, displayed by age of affected groups, local jurisdictions, and underlying cause of mortality; (b) the health problems that have changed most in terms of number of persons affected, age groups affected, jurisdictions affected or costs incurred over the last 1, 2, 5, and 10 years; (c) the extent to which health problems targeted by the state over the past several years have been ameliorated as measured by the indicators negotiated with Federal health officials; and (d) the number of related deaths and injuries before and after passage of highway speed limits and mandatory helmet laws. They also compare statistics on trauma deaths in their state with trauma deaths in states with state-wide shock/trauma treatment systems. Electronic graphs, charts, and maps of the most significant information are generated and copied for the governor's briefing book.

6.4 Scenario 4: In-Home Workstation Helps Family Take Preventive Action

A young working mother of two notices that the message light on her home video/data workstation is on. She calls up her messages and receives a reminder that her son is due for another immunization and can receive it the following Saturday morning at the managed care clinic. Through her workstation, she makes the appointment for Saturday. Another message announces that the county health information service (jointly sponsored by the public health department, the public library system, several managed-care plans, and a number of community groups) has been expanded to include new recipes in the low-fat, low-salt, and vegetarian diet sections. This message reminds her that she has been meaning to look up some information about childhood ear infections. She searches the database and identifies a 15-minute video produced by the American Academy of Family Physicians, which she lines up for viewing after dinner that evening. She then turns to a voluntary on-line survey that her family received several days ago from the state public health department. The purpose of the survey is to obtain information about her family's satisfaction with their current health care service and about their health-related behaviors. She queries other family members, completes the survey in about 10 minutes, sends it off by e-mail to the public health department, and logs off the workstation.

6.5 Scenario 5: Geographic Information System Guides Flood Emergency Response

Severe flooding threatens several counties in a Midwestern state. A district director for the state public health department is the field supervisor for the emergency. In the state capital, a deputy state public health officer coordinates logistical support and serves as the primary liaison to the Federal Emergency Management Agency.

At the center of the emergency response operations is a shared GIS database of the state which includes detailed geographic information about the population, buildings, state and county offices and facilities, transportation systems, water systems, and wells. Projections from the National Weather Service, which are used to update the database, indicate the probable areas that will be inundated in the next 24 hours. The actual progress of the river is documented by aerial photographs that are scanned and calibrated using physical features already represented in the database. Emergency workers in the field use global positioning systems (GPS) to determine the locations of particular problems, such as impassable roads and bridges, which are difficult to pinpoint in a flood.

The linking of data from weather service projections to the GIS database indicates that the flood is likely to require the evacuation of about 15,000 residents within the next 24 hours, to inundate town water systems and wells serving about 30,000 residents, and to temporarily close at least one district public health office. Invoking a decision-support algorithm, the district health officer develops a plan for allocating district public health personnel and emergency supplies. At the state capital, the deputy state public health officer makes arrangements for the National Guard to dispatch water and amphibious vehicles to a staging area near the region that will be affected first. As the evacuation occurs, regular updates from the field allow appropriate modifications in support and the development of an improved plan for the next 24-hour period.

6.6 Scenario 6: International Database Speeds Diagnosis and Treatment of Drug-Resistant Pneumonia

A public health laboratory scientist in Louisiana identifies a virulent and drug-resistant strain of pneumonia not previously seen in that state. Consulting the World Health Organization's international database of drug resistant diseases, the laboratory scientist determines that it is probably one that has been previously identified in Indonesia and the Netherlands. There is no record of other cases in the United States. Through e-mail, the scientist notifies the patient's physician, suggesting a multi-drug therapy that was effective in the Dutch cases. He also informs the state epidemiologist, updates the international database, and sends a priority message to the CDC. The epidemiologist investigating the case determines that the patient recently flew to New Orleans from Amsterdam. She adds this information to the international database and informs CDC.

6.7 Scenario 7: National Toxic Release Inventory Aids Local Environmental Impact Analysis

A state public health official is using e-mail to notify colleagues throughout the state about an upcoming videoconference on the relationship between environmental toxins and cancer. She receives a message that the county toxic release inventory database has just been updated with information from TRI94, an NLM database of toxic release data from the U.S. Environmental Protection Agency. Invoking a geographical information system, she looks at the pattern of releases and asks for summary statistics on the trends for the past five years. She asks to view any disease incidence that might correlate with the location of the toxic releases. Although a higher incidence of some cancers appears in the area near the toxic releases, the system indicates that the geographic pattern for the cancers existed prior to the source of the toxic releases.

The latest TRI data indicate that several additional chemicals are now being manufactured and transported in the county. Using other NLM databases, the public health officer reviews information about these chemicals, their environmental impact, and appropriate methods for dealing with people exposed to them. After sending a brief message about the chemicals to involved county HazMat teams, fire and rescue workers, and local health care providers, she updates the county database of potential health hazards with entries for the additional chemicals and specific automated pointers to detailed information on handling, cleanup, and effects of exposure.

6.8 Scenario 8: Digital Camera Speeds Diagnosis of Contaminated Well

A county resident with a backyard well complains to the local health department that mud and silt are coming out of the water taps in his house. A local county health inspector comes to take water samples and to inspect the interior of the well. He lowers a portable, waterproof "endoscope" with attached digital camera into the well and sees a break in the well casing about 15 feet down. The well will have to be rebuilt. The onsite inspector needs a second opinion to determine whether the problem is due to faulty installation or some subsequent cause. He sends the digital pictures directly to the state division for wells via a wireless connection to the Internet. NII technology is making cases such as this one less common. A computer search of all state well permits identifies similar wells so that owners can consider corrective action before experiencing them in the kitchen sink. Because the well "endoscope" often can prove substandard construction, contractors have an incentive to build wells right the first time.

6.9 Scenario 9: Multimedia Data Transfer Supports Long-Distance Entomology

A university-based entomologist is consulting for the state public health department. She is in her office at the university reviewing a multi-media message from a local public health department at the other end of the state. An insect not included in the on-line database of insects in the region has been discovered in a residential area. The text portion of the message describes the environment in which the insect was found and poses questions about its direct effect on humans and animals and its potential role as a disease vector. The image portion of the message includes high resolution digital pictures of the insect.

After consulting on-line reference sources, including one which maps the usual geographic distribution of this insect, the entomologist replies electronically to the local health department that the insect causes only minor irritation to humans and animals, sending a copy of her message and the incoming information to all local health departments in the region. She also uses the information in the message and additional data from her on-line references to update the regional entomological database. A consultation that once entailed travel or time-consuming and painstaking shipment of specimens has been completed in a matter of minutes.

The entomologist is not finished, however. Although relatively harmless to people and animals, this insect can severely damage crops important to the state's economy. The state was thought to be outside its geographic range. The entomologist attaches these comments and forwards her message to the state agricultural department and to entomology colleagues at universities in the region.

6.10 Scenario 10: Commuting to School on the Information Superhighway

Mr. Jose Wantabe is working in Butte, Montana in a job he considers "dead end." He is dissatisfied because has always dreamed of a career in public health. While surfing the web on his computer one evening, Jose notices that the University of Michigan School of Public Health is offering a masters degree through the "School of Public Health Without Walls," a consortium of programs offering the degree over the network. His acceptance package comes complete with a CD-ROM of hypertext reference books and study materials, and software for interacting with his professors, mentors in public health practice, and fellow students over the network. The software provided allows him to carry on two-way voice and video conversations while exchanging data in the background. The materials and software are updated regularly and automatically each time Jose connects to the consortium's database. Although Jose enjoys the multimedia format of the materials, he finds the conversations with his fellow students over the network to be even more interesting and informative. The real excitement occurs when Jose is able to link up with his mentor's computer in Colorado as she works up a epidemic of diarrhea and vomiting in a remote mountain village. While it is not quite the same as being there in person, the ability to carry on a side conversation while watching the actual data mapping and message exchanges that are occurring on his mentor's computer screen as she investigates and resolves the problem makes the practice of public health real and exciting for Jose.

7.0 HOW IS NII TECHNOLOGY CURRENTLY BEING APPLIED TO POPULATION-BASED PUBLIC HEALTH?

These futuristic scenarios, as well as current real-life applications, leave no doubt that the information needs of population-based public health are well matched with the capabilities of NII technology. Moreover, the federal NII and HPCC initiatives may provide the public health community with an opportunity to obtain funding for projects that apply NII technology to population health. While it is encouraging that a 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 health applications has come from PHS programs specifically targeted to the public health community.

7.1 Broad-based Federal NII Grant Programs

The bulk of federal funding for the NII initiative and its underlying HPCC technology has been through broad-based programs, not specifically targeted at health applications. Some of these programs, such as the National Institute of Standards and Technology's (NIST) Advanced Technology Program, are not particularly well suited for public health because they are either targeted at for-profit businesses or are intended to promote the development of high-risk technologies. But even when there is a close fit between public health applications and an NII or HPCC program, public health participation to date has been quite variable. For example, of the more than 100 applications received by the NLM in 1993 in response to its Broad Agency Announcement for Proposals for health-related applications of HPCC technology, none came from public health departments and only a few addressed issues related to population-based health. Of the 31 Distance Learning and Medical Link awards granted by the Rural Electrification Administration (REA) about which we have specific information, five have some public health component. Of the 92 projects funded by the National Telecommunications and Information Agency (NTIA) in 1994 to assist non-profit organizations in improving access to the Internet, six were awarded to public health departments, which is consistent with the small number of applications received from the public health sector. These six projects -- from the Health Department of Oklahoma City/County, the Governor's office and Department of Health in Pennsylvania, the Division of Public Health in Georgia, the Michigan Association for Local Public Health, the Saint Louis University School of Public Health, and the Health Sciences Division of Columbia University - - received substantial financial support. In fact, the partners in the Georgia Information Network for Public Health Officials (INPHO) project received the fifth highest grant award ($660,000) out of 92 NTIA projects funded.

7.2 Public Health Service Activities

With the exception of the projects mentioned above, most of the progress that has been made to date in applying NII technology to population-based public health reflects activities that can be viewed as adjuncts to the broad-based NII initiative. Perhaps the most important of these activities -- because it is a prerequisite for moving further -- is the vital role that CDC has played both in connecting public health agencies to the Internet and in providing Internet-based information services specifically designed for public health officials. Below are some specific examples of efforts that the PHS has been pursuing to develop and apply advanced information technology to community-wide health problems.

7.2.1 Office of the Assistant Secretary for Health

The Assistant Secretary for Health has made population-based health applications of the NII an issue of high priority, and has charged the PHS Public Health Data Policy Coordinating Committee with coordinating efforts in this area across the PHS, and between the PHS and other branches of the federal government, state governments, the public health community, and the private sector. This approach assures that potential synergies among diverse PHS initiatives in this area are realized, and that the leadership of PHS agencies concerned with data standards, data collection strategies, integrated information systems, and public health performance measurement are well informed about the interconnections between these activities and the NII. It also facilitates the development and implementation of PHS-wide policies that capitalize on the capabilities of the NII to meet the information needs of population-based public health at federal, state, and local levels. This paper and the April conference at NLM are but one of the outcomes of coordinated PHS activities in information infrastructure.

The Office of Disease Prevention and Health Promotion developed a prototype telecommunication-based Community Service Network in collaboration with community service providers in Washington, D.C. Now under further development by the Lawrence Livermore National Laboratory, and partly supported by the Department of Commerce Advanced Technology Program, this type of network can link personal computers across various service agencies to support one-stop shopping for clients, appointment scheduling, and coordinated service delivery. The network can be customized to meet the service needs and resources of large and small communities in both urban and rural areas.

The long-established National Health Information Center (NHIC) is expanding from a 1-800 telephone access, printed material distribution resource to include Internet-based access. The NHIC World Wide Web (WWW) Home Page, an "easy access" tool on the Internet, is currently being searched 1000 times each day by those seeking accurate and timely consumer health information. An additional WWW home page highlighting the "Put Prevention into Practice" initiative to expand the appropriate use of clinical preventive services has been added recently. These tools empower citizens and communities in support of health improvement. The NHIC is also supporting the efforts of an expert panel to develop tools for evaluating interactive communications technologies.

7.2.2 National Library of Medicine

For more than 20 years, the NLM has maintained on-line databases containing information about hazardous substances and toxic releases into the environment, as well as bibliographic information related to infectious diseases, new disease vectors, community prevention strategies, and the organization of public health services. Today, more than 100,000 institutions and individuals search these databases on line, many using Grateful Med, a user-friendly microcomputer search package. The NLM directs the National Network of Libraries of Medicine (NN/LM) whose more than 4,000 members work to equalize access to information for health professionals, irrespective of their geographic location. Although NLM databases are readily available at low cost through the Internet and commercial telecommunications networks and NN/LM document delivery and training services are available throughout the country, many public health workers do not know how to access them.

Since 1986, the NLM has also directed the Unified Medical Language System (UMLS) project. The goal of this project is to promote timely access to up-to-date health information by improving the ability of computer programs to "understand" the actual meaning of user inquiries and to use this understanding to retrieve and integrate relevant information from many disparate machine-readable information sources (6). The main UMLS database now contains terms for 223,000 health-related concepts from more than 30 source vocabularies. Since it preserves the link between the concepts and terms in the original vocabularies, this Metathesaurus can be used to translate between a user's terminology and the different vocabularies used in different databases. While originally conceived as an information retrieval tool, the UMLS also provides a vehicle for disseminating a detailed and uniform vocabulary for computerized medical records systems. It might also evolve into a standard, multipurpose nomenclature for logically integrated health information systems -- one that could capitalize on information being recorded in computerized medical records and be mapped to multiple classifications, such as ICD-10 for international morbidity and mortality reporting and CPT for physician billing. Work is currently underway to expand the UMLS to include unique public health concepts and to test the "health vocabulary" in both clinical and public health settings.

7.2.3 Agency for Health Care Policy and Research

AHCPR is working to develop uniform, accurate, and automated patient care data as part of its research activities in medical treatment effectiveness, practice guideline development and evaluation, clinical performance measures, medical review criteria, and clinical decision support systems. The Agency is also pursuing various avenues for electronic dissemination of health information to ensure fast and cost-effective availability to large audiences.

A full-text retrieval system, developed with the NLM, provides thousands of users each month with electronic access to guidelines by modem or the Internet. A prototype CD-ROM developed for medical libraries includes all versions of the 15 clinical practice guidelines released to date. The Information Resources Center for health services research, which is part of the national network of libraries of medicine, handles queries online.

AHCPR also works with the National Technical Information Service to make information available in electronic form. These activities include the development of an electronic bulletin board that has become the gateway to FEDWORLD and provides a bibliographic database of AHCPR-funded studies. National health survey data is available to users through a variety of data products (magnetic tape, PC diskettes, and CD-ROM).

AHCPR has partnered with managed care organizations and professional associations to incorporate clinical practice guidelines in various computer information systems, online retrieval services, and CD-ROM products for health care providers. Consumer health information is available through electronic kiosk projects and online information services.

7.2.4 Centers for Disease Control and Prevention

CDC has worked on several fronts over the past eight years to strengthen the public health information infrastructure. Building on needs identified in the IOM report "The Future of Public Health", CDC WONDER was developed to organize CDC's wide array of scientific and prevention data and information in a manner accessible to public health practitioners. In addition, an array of automated disease surveillance and large population surveys were developed to facilitate the collection, reporting, and analysis of important population-based health information. Finally, CDC INPHO was developed to provide leadership to state and local public health agencies as they began realizing the vision of the NII.

CDC INPHO is a programmatic effort designed to build an information and communications infrastructure linking the nation's state and local health departments to each other, CDC, other PHS agencies, and the academic community (7). Developed in partnership with state and local public health departments, academic centers, and private foundations, the goal of this project is to meet community needs in disease prevention and health promotion through improvements in communication linkages, more efficient and timely exchange of data, and better and more timely access to public health information. Georgia was the first state to come on line; during the recent flood, the e-mail component of the system played an important role in keeping the state capital informed of developments in flooded counties so that necessary supplies, personnel, and equipment could be directed to areas in need. Eleven other states are now involved in the INPHO project.

CDC WONDER is a menu-driven software program designed to help public health professionals rapidly identify and acquire critical public health information, and to share that information with their public health colleagues (8). CDC WONDER is accessed via a toll-free telephone number using a microcomputer and modem. Without the user's needing to know the location of data or communication pathways, it provides access to: people at CDC (via e-mail and the Resource Index Database); reports prepared by CDC scientists, such as MMWR articles and prevention guidelines; and over 40 scientific datasets on CDC computers, such as national public use datasets on mortality, cancer incidence, hospital discharges, AIDS, behavioral risk factors, and diabetes. The requested data can be summarized and analyzed using tools built into WONDER.

The National Telecommunications System for Surveillance (NETSS) was developed by CDC and the Council of State and Territorial Epidemiologists to collect, transmit, analyze, and disseminate weekly and annual reports of notifiable diseases. NETSS includes both core surveillance data and some additional disease-specific programmatic data, replacing paper case-report forms. The system is also used to transmit to CDC information on injuries and certain non-notifiable diseases. Surveillance data from this system are made available through CDC WONDER after publication in the MMWR Summary of Notifiable Diseases, United States. Software is provided to state health departments to analyze information and to transfer data electronically in standard format to CDC. Epi Info and Epi Map are microcomputer software packages developed by CDC and the World Health Organization. Epi Info is an epidemiological tool that can be used to build questionnaires, collect and analyze data, and organize results into text, tables, or graphs. A "Statistics for Surveillance" module that includes advanced statistical techniques has recently been produced. Epi Info is used in the NETSS to collect, analyze, and transmit information on notifiable diseases in 40 states. It is in the public domain in the United States and is used in more than 80 countries.

7.3 State Activities

A number of states have developed plans for integrated information systems and are moving to implement them. While all of these systems have the potential to support population- based health, several are being specifically designed to do so. For example:

  • The states of Washington and Minnesota have established public/private partnerships to develop comprehensive information systems that support both the delivery and financing of medical care and population-based public health activities.
  • A number of states and some metropolitan communities are developing community health management information systems (CHMIS), which will facilitate electronic claims processing and coverage verification in the health care system and maintain a community database for use by appropriate researchers and government agencies.
  • In Missouri, a public health information system is being designed that transcends current categorical program structures and organizational boundaries so as to provide more integrated and comprehensive client-centered data. Reflecting a community health focus, "clients" in this system will encompass not only people, but also restaurants, hospitals, waste systems, swimming pools, and wells.
  • Information systems in Illinois, Georgia, Mississippi and North Carolina are being designed to integrate the delivery of care to individuals across numerous state and local agencies. These systems will support one-stop shopping, case-management, and the delivery of important preventive services, such as immunization.
  • Iowa is the first state in the country to link all of its counties via fiberoptics (although local health departments are not yet connected). The system is currently being used for selected educational, health care (hospital telemedicine), and criminal justice purposes. Further connections to state agencies, libraries, and schools is planned.
  • In Utah, Internet users can now build their own tables and graphs through interactive queries from the statewide hospital discharge database and the E-code (external causes of injury) database, both available on the world-wide web. These interactive databases can be saved in text format for further analysis.

8.0 WHAT BARRIERS NEED TO BE OVERCOME TO MAKE THE VISION OF THE NII AND POPULATION HEALTH A REALITY?

Important first steps have been taken in applying NII technology to the information needs of population-based public health. Nonetheless, a much stronger connection between the NII initiative and the public health community will be needed to make the kinds of scenarios described earlier in this paper a reality.

As we move forward, it is important to remember that while the NII has an important role to play in addressing public health's information problems, it is not, by itself, a "silver bullet." A broad range of barriers currently hamper the public health community in meeting its information needs. Some are unique to public health, such as the fragmented organization of public health programs and information systems, the separation of public health from the bulk of the medical care system, the declining level of financing for essential public health services, and the paucity of informatics exposure in public health training. Others, such as the lack of nationally uniform policies related to privacy, data standards, unique identifiers, and data sharing affect many sectors, but are critical in a field like public health, which depends on bringing together many different types of data from diverse sources. The challenge, then, is to identify key issues that must be addressed in order for population- based public health to realize the benefits of the NII and to devise effective strategies for making progress on these issues.

In the discussions before and during the April meetings, five major barriers to enhancing public health applications of the NII 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. These barriers, which are discussed further below, 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 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.
8.1 Privacy

Public concern about the privacy of health data is a critical issue -- especially in an era of computerized medical records and Internet communications -- and state public health officials strongly support a nationally uniform framework that would protect the privacy of individuals while permitting critical analytic uses of health data. Without such a framework, some state governments may protect privacy through policies that prevent data linkage, hampering the development of logically integrated public health information systems. In states without sufficient or clear laws regarding privacy, health care providers and consumers may be reluctant to provide identifiable information for state-wide databases.

Since about 50 percent of the U.S. population lives near a state border, the development of reasonably comprehensive state public health information systems often requires exchange of data across one or more states. Variations in state protections of health data may preclude data sharing across state lines or involve unacceptable risks to the privacy of data that are transmitted. At the very least, the absence of nationally uniform policies to protect the privacy of individually-identifiable health information requires time-consuming, state- by-state negotiations in order to reach agreements that permit integration of data, as well as efforts to reassure the public that their data will receive reasonable protection. The absence of generally accepted "best practices" for preserving the privacy and security of health data in automated, networked systems or for linking and anonymizing health data in secure environments complicates these processes.

8.2 Health Data Standards

The lack of nationally uniform, multipurpose standards for the structure, content, and transmission of automated health data creates a "Tower of Babel" that seriously impairs the development of integrated information systems to support population-based public health. In this environment, states wishing to move forward must promulgate their own standards, negotiating with major health care payers and providers, as well as other parties whose data are critical to meeting health information needs. These duplicative efforts are time- consuming and costly, and risk the adoption of standards that are more suitable for paying claims than for meeting the needs of clinicians, researchers, and the public health community. Moreover, they inevitably lead to differing state standards that impede the collection of regional and national health statistics, and complicate public health surveillance in the many major metropolitan areas that cross state lines.

Achieving nationally uniform standards for health data that support population health is complicated by several factors. To date, there has been little direct public health participation in the standards development process, and few in the public health community are well informed about national efforts to develop consensus standards for health data. At the same time, there is uneven knowledge about projects that could lead to standardized nomenclatures for multipurpose health information systems in the near future. For example, with the expansion of the UMLS into a health vocabulary, a nomenclature may soon be available which can record data in integrated information systems in the same detailed and meaningful form in which it is entered in computerized patient and public health records. Because the UMLS Metathesaurus makes it possible to map terms in the health vocabulary to multiple classification systems, information recorded once at the point of service can be used for many different purposes. Integrated information systems designed with the flexibility to accept information in this form will be able to capitalize on the increasing use of the UMLS by the clinical and public health communities.

8.3 Awareness of NII Applicability

The low level of public health participation in broad-based NII grant programs is symptomatic of a lack of appreciation, both on the part of the NII and public health communities, of the benefits and applicability of NII technologies to population-based public health. This lack of understanding extends to the commercial information technology sector and works against creative thinking about how commercial products might be applied to the full range of public health information problems.

Multiple factors are probably at work here, including the excessively high visibility of clinical applications of the NII, a lack of information about NII grant programs among the public health community, a poor understanding of population-based public health among the NII and health care informatics communities, insufficient local investment to allow public health agencies to connect to the NII, and a lack of public appreciation of the importance of information in carrying out essential public health services. In addition, public health agencies have not been tied into the usual channels of distribution of information about NII programs. Because they have not received relevant training, many public health professionals lack the technical expertise to prepare competitive proposals for advanced information technology research or demonstration projects.

Collaboration of state and local health departments with university-based medical informatics or general computer science groups, advanced computing and telecommunications groups, the private sector, or other elements of state government is essential to apply for grants and implement applications. Some successful examples of these collaborations include the partnership of the Georgia INPHO project with the Georgia Center for Advanced Telecommunications Technology and the work of the California Health Department with Pacific Bell. To date, however, such collaboration has been relatively rare. In part, this may be due to the traditional focus of medical informatics on process automation and the public health focus on data. As computer-based patient record systems generate more data and public health officials seek to automate an array of processes, the interests of the two groups become congruent.

8.4 Workforce Training

Professionals who are unfamiliar with (or have limited access to) information technology and existing decision support and communication tools relevant to public health responsibilities cannot argue effectively for increased allocation of resources to improve the public health information infrastructure. They are unlikely to take full advantage of technology that is available to them or contribute innovative ideas for applying the information infrastructure to population health.

Facilitating advanced public health applications of information technology will require a cadre of public health professionals with advanced informatics training. It also demands significant improvements in the basic technology literacy of the general workforce in public health, and ongoing training to continuously update information skills.

8.5 Organizational and Financing Issues

The fragmented organization of public health programs plays an important role in limiting applications of the NII to population health. Public health programs are frequently funded through categorical grants, which are often associated with categorical information systems dedicated to the reporting needs of each particular program. Because these systems speak different languages (in terms of vocabulary, software and data standards), it is extremely difficult to link information across programs, even when such linkages could substantially reduce administrative work, enhance customer service, and strengthen analytic capacity. Equally important, many grants prohibit the use of categorical funds for developing or maintaining information systems that benefit other programs in addition to the one for which the funds were appropriated. As long as these restrictions (and their concomitant political and managerial barriers) apply, it is difficult for states to move forward with logically integrated information systems that could give their public health officials and policymakers a more holistic view of public health problems and resource needs.

Intergovernmental and public/private partnerships are key to public health applications of the NII for a variety of reasons, including the range of expertise that is required, the need for information from diverse sources, community-wide benefits and use, and demands for a broad base of financing. Currently, however, most states and communities have neither the policy framework nor the structural mechanisms to bring potential partners in health- oriented information systems together. Without adequate incentives to collaborate or a forum for social interaction, feasible NII projects to support population health may not get started or may falter before implementation.

9.0 STRATEGY FOR EXPANDING PUBLIC HEALTH APPLICATIONS OF THE NII

In a sense, expanding public health applications of the NII can be viewed as one component of a larger and more comprehensive public health information strategy, which needs to be developed by all parties in the public health community. To date, few public health professionals have thought strategically about their information needs. Consequently, many basic questions (e.g., What information is required, for what purpose, by whom, and in what form? How will appropriate access to usable information be ensured?) remain unanswered at national, state, and local levels. Only in the context of a larger and widely shared vision will the importance of the NII to meeting the information needs of population health be widely appreciated, or will the NII be put to use throughout the country to improve the health of whole communities.

By bringing together leaders of the public health and NII communities to discuss the issue, the April 19 conference was an important early step in a strategy to articulate the information needs of population-based public health and to encourage the application of NII technologies to public health's information problems. Those attending the follow-on session on April 20 (listed in Appendix 1) emphasized that moving forward will require the development and implementation of a comprehensive 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 address the barriers described in the previous section. They believed that such a plan should be 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.

Below, specific actions are proposed for each of the types of organizations involved in the application of NII technologies to population-based public health. These action plans are intended to stimulate discussion, to help organizations identify opportunities for involvement, and to highlight the types of synergies that can be achieved through both intra- and cross-sector collaboration. Additional information can be obtained by contacting the sources listed in Appendices 1 and 2.

9.1 State and Local Public Health Agencies

  • Work with the broad public health community (including government agencies involved in mental health, substance abuse, environmental health, and occupational health as well as public health associations) to develop a compelling vision of how NII technologies can improve population health, including specific examples of the ways that NII technology can meet the information needs of public health professionals, consumers, and policymakers.
  • Actively seek out partnerships and funding opportunities with health care organizations, medical informatics groups, and the commercial sector.
  • Ensure that public health has a seat at the table as state or community decisions about privacy, standards, sharing, and ownership of health data are discussed.
  • Join forces with other groups, including the medical informatics, telemedicine, and managed care communities, in explaining the chilling effect of the lack of federal privacy legislation on health-related applications of the NII.
  • In the absence of federal legislation, work to enact state laws that protect the privacy of individually-identifiable health information while supporting critical analytic uses of this information to improve population health.
  • In the absence of national standards, work toward statewide partnerships for the implementation of multipurpose data standards (i.e., standards that make health data useful to those who record and collect them as well as to consumers, researchers, public health professionals, policymakers, and others who require these data for health-related purposes).
  • Assure that logically integrated health information systems currently under development in states, communities, or agencies, have the flexibility to incorporate emerging vocabulary and classification standards.
  • Encourage and support information technology training for public health professionals.
  • Develop and present to relevant federal agencies specific proposals for combining funding streams to implement logically integrated health information systems that meet the needs of multiple programs. Take advantage of funding opportunities in the proposed Performance Partnership Grants to develop and maintain integrated health information systems.
9.2 Federal Agencies

Following the charge of the Vice-President, the Department of Health and Human Services (DHHS) should work closely with those in the public/private sectors who record and use health information to:

  • identify and disseminate current "best practices" for ensuring health data privacy and security;
  • assist in the development of model state laws that protect the privacy of individually-identifiable health data while preserving the usefulness of these data to support population health;
  • adopt uniform standards for health data collection/transmission to and from all federal agencies, and assure that these standards serve the needs of those who record and collect health information and those who use these data for health-related purposes; and
  • assure that health information systems under development in the federal government have the flexibility to accept data in the forms proposed for emerging vocabularies and classification systems.
Building on current activities, the Public Health Service should:
  • move forward with Performance Partnership Grants to enhance state flexibility, foster accountability for improving population health, and permit states to use federal grant funds to support logically integrated public health information systems;
  • encourage public health participation both in the expansion of the UMLS into a broad-based health vocabulary and in the large-scale UMLS testing project currently being planned by NLM and AHCPR;
  • educate potential users and developers of health information systems about the power of using the UMLS vocabulary for recording health information;
  • encourage classification system developers to use the UMLS as the foundation for their work and to develop classification systems that serve public health and health systems research purposes;
  • work with the broad public health community to highlight the importance of the NII to public health and to identify ways to promote applications to population-based public health;
  • promote understanding of the NII through CDC's Information Network for Public Health Officials (INPHO) and the Public Health Training Network (PHTN), its educational network;
  • include public health applications of the NII on the agenda of all PHS/DHHS information policy groups;
  • disseminate this report widely and generate related articles for appropriate professional journals;
  • publicize existing graduate medical informatics training programs and fellowships to public health professionals and encourage them to apply; and
  • form a strategic partnership between CDC, state and local public health associations, NLM, and the National Network of Libraries of Medicine to train state and local public health officials in the use of currently available information resources that are applicable to public health.
HPCC/NII funding agencies should:
  • publicize funding opportunities for Internet connections, demonstration projects, etc. through channels that will reach public health professionals (such as association member services); and
  • design funding programs that will encourage collaboration between public health entities, health care organizations, medical informatics researchers, and the commercial sector.
9.3 Professional Public Health Associations
  • Join together with government agencies and associations representing the broad public health community to develop a compelling vision of how NII technologies can improve population health, including specific examples of the ways that NII technology can meet the information needs of population-based public health.
  • Use meetings and publications to educate public health professionals about the importance of the privacy issue and the need to communicate their concerns to members of the U.S. Congress and state legislatures.
  • Join with professional associations in other fields, such as medical informatics, in efforts to highlight the importance of privacy legislation.
  • Encourage members to learn more about data standards, including emerging vocabularies and classification systems for health data.
  • Participate and represent the needs of the public health community in the national consensus standards development work coordinated by the American National Standards Institute's Health Informatics Standards Planning Panel.
  • Include information about the NII, its applicability to public health, and funding opportunities at meetings and in publications.
  • Disseminate information about related funding opportunities to public health professionals.
  • Publish examples of successful public health applications of NII technologies in association journals and newsletters.
  • Increase continuing education programs on the development of information strategies and on the use of information technology and services by public health professionals.
  • Publicize opportunities and encourage participation in informatics training programs.
  • Encourage schools of public health to include informatics as part of the regular curriculum.
9.4 Professional Associations (Health Care and Informatics)
  • Include information about the NII and the need to integrate health care and public health applications at meetings and in publications.
  • Publish examples of successful public health applications of NII technologies in association journals and newsletters.
9.5 Schools of Public Health
  • Integrate into the curriculum education about the central role of informatics in the future of public health, training in information technology skills, and the use of information services.
10.0 REFERENCES
  1. Fitzmaurice JM. Health care and the NII, in Putting the information infrastructure to work - a report of the information infrastructure task force committee on applications and technology. NIST Special Publication 857, 1994.
  2. Lasker RD. Improving health through advanced computing and communications: realities beyond the promise. Paper presented to the Friends of the National Library of Medicine, September 1994.
  3. McGinnis JM and Foege WH. Actual causes of death in the United States. Journal of the American Medical Association 270:2207-2212, 1993.
  4. McGinnis JM, Bailey C, Files A, Gebbie K, Harrell J, Maiese D, Radak J, Walls N, Welsh VA. A time for partnership: report of state consultations on the role of public health. Prevention Report 1-12, December 1994/January 1995.
  5. Lindberg DAB, Humphreys BL. High performance computing and communications, the national information infrastructure, and health care. Journal of the American Medical Informatics Association 2:156-159, 1995. [PubMed Central]
  6. Lindberg DAB, Humphreys BL, McCray AT. The unified medical language system. Methods of Information in Medicine. 32:281-91, 1993.
  7. Friede A, Rosen DH, Reid JA. CDC WONDER: a cooperative processing architecture for public health. Journal of the American Medical Informatics Association 1:303-312, 1994. [PubMed Central]
  8. Baker EL, Friede A, Moulton AD, Ross DA. CDC's information network for public health officials (INPHO): a framework for integrated public health information and practice. Journal of Public Health Management Practice 1:43-47, 1995.
11.0 APPENDIX
Participants in a Strategy Session on Promoting Public Health
Applications of the National Information Infrastructure
National Library of Medicine
April 20, 1995

Margaret Anderson
Health Sciences Analyst
American Public Health Association
1015 15th Street, N.W., Suite 300
Washington, D.C. 20005
(202) 789-5688

Cheryl Beversdorf
Executive Vice President
Association of State & Territorial Health Officials
415 2nd Street, N.E., Suite 200
Washington, D.C. 20002
(202) 546-5400 Fax: (202) 544-9349

William R. Braithwaite, M.D., Ph.D.
Office of the Assistant Secretary of Health
Dept. of Health and Human Services
200 Independence Avenue, S.W., Room 717-H
Washington, D.C., 20201

Ashley Coffield
Public Health Foundation
1220 L Street, N.W., Suite 350
Washington, D.C. 20005
FAX 202/898-5609

Milton Corn, M.D
. Acting Associate Director, Extramural Programs
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20874

Don E. Detmer, M.D.
Vice President and Provost for Health Sciences
University of Virginia,
Charlottesville, VA

J. Michael Fitzmaurice, Ph.D
. Director, Office of Science and Data Development
Agency for Health Care Policy & Research
2101 E. Jefferson Street, Suite 401
Rockville, MD 20852
(301) 594-1483 Fax: (301) 594-2333

Charles Flagle, D., SC.D., D. Eng.
Agency for Health Care Policy Research
2101 East Jefferson Street, Suite 501
Rockville, MD 20852-4908
(301) 594-1360, Ext. 146 Fax: (301) 594-2286

Kristine Gebbie
Office of Disease Prevention & Health Promotion
Office of the Assistant for Health
330 C Street, S.W., Switzer Bldg., Room 2132
Washington, D.C. 20201

Randy Gordon, M.D
. Associate Director for Managed Care.
Public Health Practice Program
Centers for Disease Control and Prevention
1600 Clifton Springs Road
Atlanta, GA 30333

Betsy L. Humphreys
Assistant Director for Health Services Research
Information
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20874
tel. 301/496-6921, fax 301/496-6923
email blh@nlm.nih.gov

Garland Land
Director
Division of Health Resources
Missouri Department of Health
P.O. Box 570
Jefferson City, MO 65102-0570
(314) 751-6272 Fax: (314) 526-4102

Ed Larkin, M.D.
Health Officer
Barry-Eaton Health District
528 Beech Street
Charlotte, MI 48813

Roz Lasker, M.D.
Deputy Assistant Secretary for Health
(Policy Development)
Office of the Assistant Secretary for Health
717H Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
(202) 260-0217

Michael Lavoie
Director Vital Records
Georgia Department of Human Resources
47 Trinity Avenue, S.W
. Atlanta, GA 30334-5600
(404) 656-4750 Fax: (404) 651-9427

Stacey Long
National Association of Health
Data Organizations
254B N. Washington Street
Falls Church, VA 22046

Denise Love
Director
Office of Health Data Analysis
Utah Department of Health
288 N. 1460 West
Salt Lake City, UT 84116-0990
(801) 538-7048 Fax: (801) 538-7053

John Lumpkin, M.D., M.P.H.
State Health Officer
Illinois Department of Public Health
535 West Jefferson Street
Springfield, Illinois 62761

Elaine Russo Martin
Library of Health Science MC/763
University of Illinois at Chicago
1750 West Polk Street
P.O. Box 7509
Chicago, IL 60612
(312) 996-8974 Fax: (312) 996-9584

Joyce A. Mitchell, Ph.D
. Assoc. Dean for Computing and Information
Management
Director, Medical Informatics
Professor, Medical Genetics, Department of
Pediatrics
School of Medicine
University of Missouri
605 Lewis Hall
Columbia, MO 65211
(314) 882-6966

Neal Neuberger
Center for Public Service Communications
1600 Wilson Blvd., Suite 500
Arlington, VA 22209

Nancy Rawding
Executive Director
National Association of City & County Health
Officials
440 First St. NW, Suite 500
Washington, D.C. 20001

David Ross, M.D.
Public Health Practice Program Office
Centers for Disease Control and Prevention
1600 Clifton Road, N.E., Mailstop E20
Atlanta, GA 30333
(404) 639-1902

James Scanlon
Director, Division of Data Policy
U.S. Public Health Service
200 Independence Ave., SW
Room 740G
Washington, DC 20201

John Carver Scott
Center for Public Service Communications
1600 Wilson Boulevard, Suite 500
Arlington, VA 22209
(703) 528-0801 Fax: (703) 528-0802

12.0 APPENDIX 2: SOURCES OF ADDITIONAL INFORMATION

Further information about this paper and activities related to the NII and population-based public health can be obtained from the participants of the strategy session listed in Appendix 1.

In addition, for those with access to the Internet, up-to-date information on recent grant awards and available funding opportunities can be obtained through the following web server and gopher addresses:

http://www.hpcc.gov
gopher://gopher.hpcc.gov

For information about HPCC grants and activities, contact:

National Coordination Office for High Performance Computing and
Communications
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Phone: (301) 402-4100
Fax: (301) 402-4080
E-mail: hpcc@nlm.nih.gov

For information about the Telecommunications and Information Infrastructure Assistance Program of the National Telecommunications and Infrastructure Administration:

consult:
http://www.ntia.doc.gov./www/otiahome/tiiap/tiiap.html

contact: Laura Breedon or Steve Downs
Phone: (202) 482-2048

For information about the Centers for Disease Control and
Prevention INPHO projects:

consult: http://www.cdc.gov

contact: Linda Wade
Public Health Practice Program Office
Phone: (404) 639-0431

For information about funding of health-related projects at the Rural Electrification Administration:

contact: Larry Bryant
Phone: (202) 690-3594