Written Supplement
to the Testimony
of Dr. Philip R. Lee

Prepared to supplement
the October 30^th, 2000, presentation of Dr. Lee to
the Workgroup on Health Statistics for the 21st Century, and
the Workgroup on National Health Information Infrastructure

of the National Committee on Vital and Health Statistics

by

Paul B. Lee, Ben G. Abramovice, and Philip R. Lee MD

January, 2001

Table of Contents

Introduction

Executive Summary

Making and Using the Roadmap

Recommended Federal Actions

Where to Start

Background

Historical Milestones of the NII

Executive Branch Responsibilities for National Information Infrastructure Policy

Reports Focused on Health Applications

Best Practices in Health Information Infrastructure

Current Federal Resources

Health Delivery and Financing Resources

Agencies Providing Population Health Resources

Crosscutting Resources Providing Models for the Future

Environmental Health Information Infrastructure

Strategies for the Future

Developing the National Health Information Infrastructure

Implementing the 21^st Century Vision of Health Statistics

Implementing the Vision of Health Statistics and Developing the NHII in an Integrated Way

Conclusion

Bibliography

Appendix: Transcript of Dr. Lee's Testimony

About the Authors

Endnotes

Introduction

This report is prepared to supplement testimony by Dr. Philip R. Lee before the National Committee on Vital and Health Statistics (NCVHS) at a joint hearing of the Workgroup on Health Statistics for the 21st Century and the Workgroup on National Health Information Infrastructure (NHII). The hearing took place on October 30, 2000, at the Canterbury Hotel in San Francisco, California.

Dr. Lee's testimony and this written report address issues raised in two NCVHS working papers. The working paper on health statistics is titled, Shaping a Vision for 21st Century Health Statistics - Interim Report - June 2000. The working paper on information infrastructure is titled, Toward a National Health Information Infrastructure - Interim Report - June 2000.

Our objective is to reinforce specific areas of these NCVHS reports that we think are particularly important and to point out additional findings that we believe should be in the Committee's final reports. Dr. Lee's testimony responded to five areas of concern that the workgroups have identified:

History: Dr. Lee identified background information that he believes is important to consider in specific areas.

Collaboration: Dr. Lee emphasized the need for crosscutting, interdepartmental, intergovernmental, and public/private teamwork and partnerships in the field of health information.

Community: Dr. Lee encouraged more analysis of the "community domain" of health information and making health information available for and centered on practical local issues.

Barriers: Dr. Lee itemized concerns about obstacles to implementing the NHII and noted his strong agreement with the sections of the interim reports that deal with this subject.

Recommendations: Dr. Lee presented specific ideas regarding appropriate actions for the federal government to take over the next decade to develop the NHII and 21st Century Health Statistics.

In addition to supplementing Dr. Lee's testimony in the areas identified above, this document provides an analysis of the data resources and methods needed within the NHII to implement a statistical system based on determinants of health. Our examination of this topic covers the implications of new technology for data collection, approaches to converting data into useful information, and the scope of health and quality of life issues that warrant the concern of health statisticians.

This report is about developing the best possible health information system, one that will better serve the needs of people, their communities, and the nation at large. This can be achieved through the synthesis of 1) a new system of health statistics and 2) a health information infrastructure that is fully implemented at the national, state and local levels. In this process, health data is collected through the requisite infrastructure and developed into information through analysis. The health information is then communicated through the infrastructure to people, communities, and leaders for purposes of planning and decision-making. The outcome is informed and shared decision-making at all levels.

We begin this report with our vision of the future and detail our recommendations for federal action during the next ten years. We emphasize the need to have and follow a roadmap. To this end, we provide an analysis of policy options and recommendations for leadership structures, investment and operating budgets, and procedures for implementing a major development initiative.

In order to view the NCVHS Workgroup reports in context, we provide some background. We highlight the research and development milestones that led to the creation of the National Information Infrastructure (NII) beginning with a precursor to the Internet created by the Department of Defense (DoD) known as the Advanced Research Projects Agency Network (ARPANET). The National Science Foundation (NSF) enabled the formation of what is called the Internet and the European Particle Laboratory in Geneva created the World Wide Web (WWW), a component of the Internet. Key legislation in the 1990's created a component of the Internet composed primarily of government systems called the National Information Infrastructure. We then review the series of laws that has promoted the technical aspects of the NII by looking at the effect of statutes on health applications that use the NII. This is followed by an analysis of executive branch responsibilities for NII policy. Next, we cite influential reports that focus on the positive potential for health applications for the NII. We identify best practices in the public and private sector. These will provide the building blocks for a health domain within the NII.

The next section of this report identifies current federal resources that are critical for the fulfillment of the NVCHS vision. A large number of federal agencies are already participating in developing building blocks of the NHII. The first set of health information resources we study are those relating to federal medical delivery systems – Military, Veterans, Indian Health Service and the Health Care Financing Administration. The second set of health information resources we investigate are those supporting population-based public health practice both within the United States Public Health Service (USPHS) and at the state level of government. Our analysis looks at the organizational distribution of these resources on an agency-by-agency basis. We also examine the level of coordination across agencies for data associated with different demographic groups. We conclude our analysis of existing federal resources by focusing on environmental health information infrastructure. We break this subject down according to whether the agency that provides the resource is inside or outside the USPHS. We then look at environmental health information partnerships and recommend an Environmental Health tracking system.

The next section of our paper is about strategies for the future. We start with infrastructure issues. We comment on each of the three major dimensions of the NHII that the workgroup has defined. We seek to give constructive suggestions for dealing with barriers and stimulating positive change. We close our discussion of infrastructure by raising issues about strategic technologies that we believe have policy relevance. Next, we analyze the ten principles for 21st Century health statistics. The bulk of our points are about using a determinants of health framework for health statistics that leads to more effective community-level population health practices. This is offset by the need to protect individual rights, particularly those related to privacy.

Certain themes run through all the major sections of are analysis. These themes relate to collecting and organizing health data and selecting community-focused topics for investigation.

Collecting health data: The health data we collect have been based on periodic surveys and extracting health information from birth and death records as well as administrative data about clinical encounters. There is an increasing need for longitudinal studies. The computer-based patient record offers a rich opportunity for more detailed coherent data about entire episodes of care instead of just individual encounters. Technology in the 21^st Century will allow automated monitoring of patients and their environments.

Organizing health data: The methods of organizing health data has relied heavily on the use of simple statistical averages, correlation, rank ordering, and rates. Sophisticated tools like multi-factor regression analysis have led to fundamental breakthroughs in public health theory and social epidemiology. New approaches like using geographic information systems are being used to augment the process of intuitive pattern recognition. The logical systems for complex, dynamic process modeling and their companion software technologies are also available. These approaches will need to be integrated with communication techniques to make 21st Century health statistics useful at the community level.

Selecting health topics to investigate: The subject of health statistics has broadened from concerns about sanitation problems, communicable diseases, and medical treatment. Health statistics have not adequately addressed chronic conditions, co-morbidity, functional impairment, disability, environmental health effects, and other issues relating to individual and community health.

Executive Summary

This report is a supplement to testimony before the workgroups of the NCVHS that focus on health information infrastructure and health statistics. Both the testimony and this written supplement are our response to the interim reports of these workgroups. The findings and recommendations of our written testimony are summarized in this executive summary. Each section of this paper identifies the aspects of the interim reports that we recommend the Workgroups augment in their final versions.

The Committee has characterized its current process as articulating a shared vision. We believe this is being accomplished successfully. What is needed now is a roadmap. Our central recommendations pertain to federal actions that we believe should be taken to implement the NCVHS vision for health statistics and health information infrastructure. We recommend the following:

• The planning and implementation of a 14 billion dollar, ten-year Health Information and Communication for America Initiative.
• The overall leadership of the Initiative will come from a new administrative structure within the White House with sufficient authority to assure interdepartmental accountability.
• The Office of the Secretary in the Department of Health and Human Services (DHHS-OS) will be responsible for providing overall management of the Initiative's implementation.
• A new Health Information, Communication and Data Agency (HICDA) within the DHHS that will provide a comprehensive, integrated set of functions related to health statistics and the NHII through a combination of existing resources and capabilities combined with new ones.
• The mission of the Initiative will be incorporated into the DHHS strategic plan and the performance plans of the Department of Health and Human Services operating divisions (DHHS-OPDIVs).
• The Initiative’s investment related to community and population health in departments other than the DHHS will be coordinated through a Council of Population Health Impact Officers (CPHIOs).
• The utilization of the Initiative’s investments related to federally-operated delivery of health services will be coordinated through an interagency structure suited to that purpose.
• Federal investments in state level implementation of the initiatives goals will be sustained over the ten years of the Initiative.

In response to the question of where to start, we support the recommendation by the PEW Commission on Environmental Health that a federally sponsored national tracking system be created within the NHII that can locate, identify and measure chronic diseases in relation to environmental exposures. This network would have five components: 1) a baseline tracking network, 2) an early warning system, 3) state-level pilot programs, 4) investigative capabilities, and 5) research and community links.

In addition to the major recommendations listed above, we make a number of suggestions for the final reports relating to background materials, current federal resources, and strategies for the future. We recommend that the Workgroups final reports include more background in either the text or an appendix. We have specified the type of content we believe is appropriate in the NHII final report. Similar historical and best practice information would also be appropriate in the health statistics report. More specifically, we identify 1) specific research and development precursors of the NII and the NHII, and 2) federal legislation promoting technology that we believe warrant discussion in the final reports. We also recommend that the background subjects addressed in the final reports include 1) the administrative and advisory bodies with responsibilities for information technology in the health sector, 2) reports and white papers that have guided the development of the NHII, and 3) contributions of both public and private entities to health resources on the Internet.

We identify specific types of current federal resources that we think play a part in reaching the goals described in the interim reports. We recommend that the final reports include an overview of current resources and capabilities that provide building blocks for the NHII. This overview should cover 1) healthcare delivery information resources, 2) healthcare financing information resources, 3) population health information resources for different demographic groups, and 4) environmental health information resources.

Although the NHII is more than technology, we believe there are important technology policy positions that the Committee should take. The NHII final report should focus more on the role of so-called third-generation technology. Third-generation technology will enable high performance mobile Internet usage. We also recommend that the final report deal with the upcoming problem of the allocation of bandwidth. We believe that the best solution is for a significant portion of bandwidth to be permanently allocated to the public benefit functions of the NHII, particularly emergency preparedness.

We recommend that the final report on the NHII set a high priority on advances in four types of NHII applications: 1) patient health records, 2) chronic disease management, 3) public health toolkits, and 4) informed-shared decision making supports.

• We limit our discussion of computer-based patient record applications to the "government computer-based patient record" or GCPR and we encourage the Committee to further define the role of the GCPR within the NHII.
• In the category of telehealth applications, we encourage the Committee to further investigate recent developments in chronic disease management, particularly for conditions that are highly prevalent and result in preventable emergency procedures and hospitalizations.
• We recommend that Public Health informatics resources be developed within the NHII including tools for 1) integrating data, 2) producing high-quality community-level data, 3) identifying significant health trends in real-time, 4) displaying geographic information graphically, and 5) supporting participation and collaboration at the community level in health promotion, disease prevention, and care for vulnerable populations.
• We encourage the Committee to recognize the need for research, development, and dissemination of innovative and effective health communication programs as part of the roadmap for reaching the NCVHS vision. We encourage the Working Group to provide additional documentation about the field of Interactive Health Communication (IHC) in the final report and to promote the evaluation and development of IHC applications within the Personal Health Domain

For each of the 10 principles for the 21^st Century health statistics, we make one or more recommendations.

Privacy: We recommend that all laws that now have conflicting medical privacy provisions be reconciled. We recommend that the Committee devote a section of the final report to definitions, particularly relating to privacy, confidentiality, security, and fair information practices. We recommend that the Committee continue to examine the issue of a balance point between consumer protection and health research needs related to personally identifiable health information.

Conceptual framework: We recommend that the final report describe the conceptual framework for the health statistics in more detail. We suggest the final report accomplish this by giving more details about the complex systems view of health determinants than the interim report mentions.

Identifying and addressing issues and needs: We recommend that the final report deal directly with the knowledge gaps in chronic care, environmental health effect, and complex co-morbidities. We recommend that the final report be more specific about the means the Workgroup envisions for identifying and addressing health issues. In our view, the means should clearly reflect the system of health indicators established through the Healthy People 2010 process.

Levels of aggregation: We recommend that the final report devote more analysis to the means by which data users at the community level can benefit from health statistics.

Standards and unitary data collection: We have two recommendations that relate to these principles. We recommend that the final report discuss the use of interagency forums as a means of resolving standardization and integration problems. We also recommend that the NCVHS take appropriate actions to foster model state integration programs.

Access and ease of use: We recommend that the final report be more specific about what remedies exist for the lack of universal access and what advantages or disadvantages are carried by each of these policy options. We recommend that the final report identify what specific types of tools, resources, and capabilities will be needed to make health information useful at the community level.

Policy relevance: We recommend that the final report recognize that the policy relevance of health data varies according to the definition of "health" being used. We encourage the NCVHS to adopt a definition of "health" consistent with the community focus of Healthy People 2010. Based on this, we encourage the NCVHS to adopt a model that links health policy information with "quality-of-life." We also emphasize the importance of developing health information resources that are practical to use at the community level.

Broad collaboration: We recommend that the final report organize its discussion of collaboration in four types: 1) interdepartmental/cross-sectoral, 2) intergovernmental, 3) public-private, and 4) medicine and public health on the community level. We recommend that interagency data forums be established for all major population health issues. We encourage standards for local and state data systems so that comparisons are valid. We recommend that federal investments be directed at establishing state-level health information infrastructure models. Whenever possible partnering with private organizations should be part of the governmental approach to developing the NHII. We also strongly encourage healthcare providers to partner with the communities they serve.

Adequate, well-managed resources: As noted above, we recommend the creation of organizational structures in the White House, within the Department of Health and Human Services (DHHS), and across the federal government that will provide the necessary leadership and management for implementing the NCVHS vision. We recommend a ten-year federal investment in developing the NHII that will require a $14 billion investment and will generate both social and financial returns to the public.

Making and Using the Roadmap

Section 4 of Toward a National Health Information Infrastructure briefly describes the Committee’s role and current process for distilling a consensus about the development of the NHII and the nation’s systems of health statistics. The NCVHS framework for the NHII and related health statistics systems is involved in an ongoing process of development that has resulted in three major milestones to date. The first was a report presented to the DHHS Data Council in October of 1998 entitled, Assuring a Health Dimension for the National Information Infrastructure. In June 2000, the NCVHS issued two additional milestone documents. One was an interim report entitled, Toward a National Health Information Infrastructure (NHII). The other was entitled, Shaping a Vision for 21^st Century Health Statistics.

We wish to commend the Committee for the outstanding leadership it has provided in this process. The NCHVS interim reports for the year 2000 have brought together the top leaders in the field of health and information technology and have documented critical steps for the future.

As the process continues we hope to see the interim reports finalized with additional detail in many of the areas covered in this supplement to Dr. Lee's testimony in October. As Dr. Don Detmer pointed out at the National Academy of Sciences symposium celebrating the 50th Anniversary of the NCVHS, the two reports together provide the nation with "information for health strategies." In their final presentation, the two reports could be effectively integrated into a single document. Additionally, we agree with Dr. Detmer's assertion that there is a need for a roadmap that spells out how to achieve the goals envisioned by the NCVHS. This "roadmap" should include a plan showing the critical path that must be followed, a budget proposal, and a clear organizational design that specifies appropriate leadership and management structures.

In the next four years, the new administration should rapidly accelerate the utilization of the vast capacity of the Internet to improve the health delivery systems of the country. Accomplishing this goal will require further re-invention of personal medical service delivery, re-engineering and expansion of core population-based public health, and development of resources to support the emerging consensus place of health that enables communities to achieve their health goals. The NHII development efforts should be carefully planned to integrate the personal and population approaches to health.

The first step is to address any data types and specific data elements that are currently missing from the vast data resources maintained by the DHHS and other federal departments and agencies. The department uses its data resources to guide policies, justify budget requests, implement regulatory responsibility, administer programs, and evaluate performance. The second step is to identify those analytical processes and dissemination pathways that are currently under utilized. The disparate elements in the health world have a natural interrelationship that is hindered by the lack of data integration. One key is to model these interconnections at a sufficiently high level in the government so that the many pertinent executive branch councils, commissions, and departments are included.

Once we enter an era of health policy based on current population health concepts, we will need further development in the data and surveillance approach. Although we do not want to neglect the outstanding achievements in bio-epidemiology, core public health, and medicine, new instruments are needed to monitor performance as new population interventions are implemented.

The Internet has great potential benefit for the health of the American people. This goal can best be achieved by a collaboration that combines the best efforts of the public, private, and non-profit sectors. This should involve a long-term commitment of the parties involved to develop, deploy, and disseminate the full range of Internet health capabilities.

The value of e-health applications must be based on objective scientific evaluation. New data appears to support the proposition that the application of interactive health communication (IHC) to disease management improves outcomes and saves money.¹ Recently a prominent health plan and its e-health application service provider have asserted that the initial cost of Internet-based care management for coronary heart failure (CHF) has been recovered so quickly from savings that the rate of return on the investment was 200% within the first year. ² A recent meta-analysis of five IHC-based disease management programs for CHF showed savings from reduced emergency room visits and fewer inpatient hospitalizations of $3,300 dollars or more per patient per year.³ Applying these indicators of savings potential to the estimated 4.5 million CHF patients in the US today provides a rationale for considering a much greater investment in these technologies and practices than exists today.

The new Administration should seek to accelerate the availability of applications that work for improving outcomes in widely prevalent, high-cost conditions. Investment should be placed in scaling up applications that have shown the ability to improve outcomes through objective, scientific trials. A portion of overall cost savings should be reinvested in previously designated programs.

Another area of emphasis should be the use of technology to measure and monitor chronic conditions more frequently and more thoroughly. Programs should also be developed to utilize the selective measurement data (health metrics) that is captured to encourage positive change in the utilization of health service. This change will enable a system-wide shift in emphasis from 1) acute to chronic care and 2) from services that are episodic and expensive to those that are frequent and less costly. Health metrics will be part of an interactive communication paradigm because the technology systems will be intuitive and easy to use even for people with disabilities.

The next-generation of Internet health projects should address the major technical, organizational, educational/cultural and public policy challenges that currently prevent us from realizing the full benefit of health information technology. The government’s goals in this area should be achieved by rewarding performance-based solutions and avoiding arbitrary, unfunded mandates. When purchasing health services the federal government should instead implement a monetary reward system based on provider performance.

Recommended Federal Actions

The federal approach to developing the NHII has resulted in many achievements. However, experts in the field still voice concerns in the following areas.

• An absence of specialized leadership at some levels.
• Insufficient coordinated funding for comprehensive planning and integration of new and existing databases.
• Lack of a consolidated, administration-wide management structure grounded in health domain expertise.

The DHHS has known for over ten years that it has critical data gaps, inadequate information about health systems, and incomplete tracking of specific sub-population groups. Although information acquisition is really part of the core of good public health practice, it is typically viewed as budget overhead. Since federal overhead has no constituency, the data programs of the DHHS have not been able to compete in Congress for funding against programs that touch people’s lives in a more tangible way.

Therefore, in order to realize the full potential of the NHII, we propose a new Health Information and Communication for America Initiative. We propose a $14 billion federal investment in a ten-year Initiative that will serve to build out the NHII. The Initiative will provide capital investment in development and related operating expenses but will not fund currently budgeted expenses. We anticipate a need for funding streams in five tactical categories.

Overall leadership: We recommend that the overall leadership of the Initiative come from a new administrative structure within the White House with sufficient authority assure interdepartmental accountability.

Overall management: It is critically important that the Office of the Secretary in the Department of Health and Human Services (DHHS-OS) be responsible for providing overall management of the Initiatives implementation. This will assure that all aspects of the work are grounded in health domain expertise and will benefit from consistent, well-coordinated guidance and oversight.

New agency: In order to provide a true focal point for the day-to-day work of building the NHII and its content, we propose the creation of a new agency within the DHHS. The new Health Information, Communication and Data Agency (HICDA) would strengthen the development of data policy, enhance analytic capacities and information dissemination channels, and increase the effectiveness of communication programs.

Data analysis: The data analysis functions of the HICDA would be accomplished by combining the existing National Center for Health Statistics with the major general purpose survey activities currently conducted by a variety of operating divisions. A special focus needs to be placed on developing new longitudinal statistical instruments. HICDA would also provide liaison for the data acquisition activities that remain in other the DHHS operating divisions and with data sources external to the DHHS.

Concentration of effort: The largest portion of the investment should fund work administered by the operating divisions of the Department of Health And Human Services (DHHS-OPDIVs), especially the Centers for Disease Control (CDC), the National Institutes of Health (NIH)/the National Library of Medicine (NLM), the Health Care Financing Administration (HCFA), and the Agency for Healthcare Research and Quality (AHRQ). Substantial resources should also be applied through the Health Resources and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMHSA), and the Indian Health Service (IHS). Funds invested through the Agency for Toxic Substances and Disease Registry (ATSDR) should be coordinated with the efforts of the CDC.

Crosscutting Administration-wide coordination: The need for liaison and cross-departmental teamwork falls into the broad areas of 1) service delivery and financing as well as 2) community and population health. The implementation of the Initiative’s investment in departments other than the DHHS will be directed by departmental Population Health Impact Officers (PHIOs). Each PHIO will administer these new funding streams that will augment their department's funds already allocated to personal or population health.

• The investment in informatics related to financing and delivery of health services should include the federally-operated delivery systems within the Veterans Administration, the Department of Defense, the Federal Bureau of Prisons, and the Indian Health Service.
• The investment in informatics related to community and population health should fund work in all departments with population health impacts – Transportation, Housing and Urban Development, Agriculture, Education, Justice, Environmental Protection Agency, Commerce, Defense, Interior, Agency for International Development and others, as appropriate.

Deployment and dissemination: Implementation will not be complete until the core national infrastructure is reflected in the capabilities of each state and ultimately reaches into each local community. To succeed the Initiative will need to leverage the unique capabilities of organizations in the independent sector.

The Initiative’s investment in the states shall be augmented by matching funds from the state based upon an agreed formula. Over time, the federal investment will have to be matched by an increase in state participation.

• States will use these combined funds for leadership development, training, standards implementation, and organizational development at statewide and local levels.
• Local governments that administer their own health department and can demonstrate special circumstances may apply directly to the federal government for Initiative funds. We expect that the expenditure level for this investment line will increase in the later years of the Initiative.
• Non-governmental organizations should also be eligible for a special grant program addressing specialized challenges and opportunities.

The Initiative will be designed to benefit all major participants. Consumers such as health plan beneficiaries, chronic and acute care patients, families, and informal caregivers will benefit from successful health decisions. Group purchasers, small group and individual purchasers will get better service for lower prices.

Providers of care will have fewer errors and gain workflow efficiencies. Health plans and other risk bearers will benefit from a lower cost of service because the risk will be calculated more accurately and will be more controllable. Regulators will be able to better control fraud and abuse. Public health entities will automate much of the monitoring that is their responsibility as well as branch out into new areas of public health at the community level. Academic groups including researchers and professional educators will benefit because of the large amount of credible new data.

While this Initiative seems to be that elusive all things to all people, it can come close if people of good intent work for that common goal.

Where to Start

The value of the newly directed NHII cannot be overstated. With so many aspects of health statistics and the NHII to work on, questions will inevitably arise about where to focus, prioritize, and begin. In response, we refer to recent findings by the PEW Foundation's Blue Ribbon Commission on Environmental Health. The PEW Commission’s report highlights an area of population health that mandates direct and immediate intervention. This report noted that the fastest growing segment of health needs is that of chronic disease which affects over 100 million people. The annual cost to our society in healthcare cost and lost productivity is over $300 billion.

Chronic health problems such as asthma, diabetes, and various neurological conditions can be caused or exacerbated by environmental factors which, when properly defined, can be addressed with modern health technology. A primary barrier to reducing this problem is the lack of a nationwide tracking system that would locate, measure and otherwise make known various environmental factors that are linked to these chronic illnesses. This position recognizes that there is a functional tracking system for environmental toxins in relation to ecology and regulation.

We support the PEW Commission recommendation that a federally sponsored national tracking system be created that can locate, identify and measure these diseases and exposures. This network would have five components:

• A national baseline tracking network.
• An early warning system for critical health threats.
• State-level pilot tracking programs to determine which tracking methodologies work.
• Federal investigative response capability.
• Tracking links to communities and research bodies.

At last count, only five states had some form of tracking system and within these states there was little knowledge of tracking systems that were operational on the local level. It is clear that the necessary tracking system cannot function without improved statistical system design and the expansion of NHII capabilities.

As a major effort towards stemming the rise of chronic diseases, it is recommended that the federal government fund and implement a nationwide health tracking network that supports community and state efforts towards the same goal. The completion date for such a project would be 2005. This effort to bridge the environmental health gap will take the cooperation and collaboration of many groups to be successful.

Table #1: Long-Term Federal Budget for NHII Development

Table #2: Proposed NHII Distribution Destinations

* DHHS-OS: Department of Health and Human Services - Office of the Secretary

** HICDA: proposed Health Information, Communication, and Data Agency

*** OPDIVs: operating divisions of DHHS

**** NGOs: non-governmental organizations

Background

Section 3 of Toward a National Health Information Infrastructure identifies specific highlights of the foundations for the NHII relating to 1) legislation promoting technical infrastructure,⁴ 2) reports focused on health applications,⁵ and 3) best practices.⁶ In this portion of this report, we comment on the significance of some of these laws, reports, and international models. We also identify the organizational structure within the White House and across the federal government that helps guide development of the NHII. We then review some private sector best practices in the e-health field.

Historical Milestones of the NII

In this portion of the report we highlight research and development milestones in the fields such as computing, communication, and public policy that are being brought together to make a make NII possible. We also summarize the series of federal laws relating to NII. We discuss the impact of these laws on technology development and their subsequent application in the health field.

Research and Development Precursors

Today the NII is using the Internet to achieve its goal of transforming society to the Information Age by providing fast access to a huge array of information resources and services with the storage, processing and display of voice, data, and images. It utilizes an expansive range of equipment including cameras, telephones, microwave nets, televisions, fiber optic cable, fax machines, transmission lines. The NII has changed the way government functions and will continue to do so far into the future.

The technologies that led to the current Information Age began being developed in the United States military in the 1940’s. The integration of multiple computer networks has its origin in the defense research community during the 1960’s.

The DoD's Advanced Research Project Agency (ARPA) pioneered timesharing, computer graphics, and packet switching. By the late 1960’s, these innovations provided the foundations for ARPANET, precursor to the Internet.⁷

• In the 1980’s, the NSF funded the development of equipment to enable other networks to link to this government network forming a vast system of computer networks linked by telephone lines. Thus was formed the world’s largest communication system – the Internet – as a publicly accessible network of networks.
• In 1989, CERN, the European Particle Physics Lab in Geneva, created the WWW that has become the favorite network on the Internet.
• During the 1990’s, the United States government and high-tech industries worked together to mold the Internet into a National Information Infrastructure.

Legislation promoting technology for National Information Infrastructure

In the United States, the NII, sometimes called the information super highway, evolved from the High Performance Computing and Communications (HPCC) Act of 1991 and the Telecommunications Act of 1993. Since then, federal laws that have guided technical infrastructure development include 1) the Government Performance and Results Act of 1993 (GPRA), 2) the Information Technology Resource Management Act of 1996 (ITRMA), 3) the Telecommunications Act of 1996, and 4) the Networking and Information Technology Research and Development Act of 2000 (NITR&D).

GPRA established a process of long-range strategic planning, annual performance review, planning, benchmarking and performance measurement, and reporting and policy improvement. The Act follows a classic management-by-objective format. This process has been taken through a complete strategic cycle and is now entering a second cycle.⁸

• ITRMA also known as the Clinger-Cohen Act (CCA), provides information technology management for all government agencies although it was passed as part of a military appropriation. The Act’s directives are particularly significant initiatives like the Next-generation Internet (NGI).
• The Telecommunications Act of 1996 mandates competition in all communications markets. Significantly, the Telecommunications Act also affirms the core principle of the Communications Act of 1934 – that the FCC has an obligation to exercise its authority in furtherance of "the public interest, convenience and necessity." Implementation of the Act in a pro-competitive and timely fashion is the FCC's principal task.
• NITR&D re-authorized and amended the HPCC Act of 1991.

Three laws are particularly notable for the provisions they have related to health applications of the NII. The Telecommunications Act of 1996 and NITR&D have provisions intended to promote the development of information infrastructure specifically for health applications. Additionally, the Health Insurance Portability and Accountability Act of 1996 (HIPPA) deals extensively with electronic data related to healthcare delivery and financing.

The Telecommunications Act of 1996 had a provision intended to stimulate the development of the NHII in rural areas. The mechanism to realize this goal was a subsidy for the cost of Internet use by rural hospitals. Rural hospitals were to be charged no more than their urban counterparts although remote areas are more costly to service. To prevent rural telecommunications carriers from bearing an undue economic burden, they were to be paid the difference between rural and urban rates from the Universal Service Fund. The reason this statute did not succeed in producing the intended benefit for rural healthcare was interconnection exemptions for small carriers and sparsely populated areas provided in the original act.

The NITR&D authorized development of high performance health applications for the National Information Infrastructure. Many of the awards granted for the Initiative through the NSF will result in technologies that will enable future health applications. However, none of the projects is specifically directed to the grand challenges associated with population health today.

Concerns over the privacy of personal health information are addressed in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The HIPAA sets in motion a process that will lead to uniform national health standards and health information privacy. The DHHS has adopted standards to support the electronic exchange of a variety of administrative and financial healthcare transactions. Stakeholders who conduct electronic transactions must comply with the standards within two years. Small plans are allowed to take three years.

While much of the HIPAA is concerned with reducing the costly amount of paper transactions that are involved in the health enterprise, the act recognizes the need for privacy and confidentially protections of the health information.

The Secretary of the DHHS was required by HIPAA to promulgate security standards to safeguard health information during transmission and while stored in information systems. The rules issued on December 20^th, 2000 apply to all healthcare providers, health plans, and clearinghouses (entities that process and transmit claims data) that transmit health information in electronic form, and cover identifiable health information in electronic and paper records as well as oral communications. Key provisions include:

Access: People have the right to see and copy their own medical records. Most states do not currently grant people such broad access.

Limits on disclosure: The regulation greatly restricts access to health information. Of note: for disclosures relating to treatment, payment and healthcare operations, providers must obtain patient consent.

Employers: Employers are barred from receiving "protected health information" except for specific functions related to providing and paying for healthcare. Employers must establish a firewall between the healthcare division and employees who make decisions about employment.

Law enforcement: Health care providers and plans are prohibited from releasing patient data to federal, state, or local law enforcement without some form of legal process, including a warrant, court order or administrative subpoena.

Research: All research, whether publicly or privately funded, must be overseen by either an Institutional Review Board (IRB) or Privacy Board if the researcher seeks a waiver of informed consent.

Penalties: Health care providers, health plans, and clearinghouses are subject to civil and criminal penalties (up to $250,000/year and 10 years in jail) for violating the law. HIPAA constrained the Secretary from including a private right of action for individuals to sue for violations of the law.

State laws: HIPAA stipulates that the federal regulations do not preempt or override stronger state law. Instead, they set a baseline of protections above which the states could go to better protect their citizens.⁹

Executive Branch Responsibilities for National Information Infrastructure Policy

In the United States, there is a complex web of administrative and advisory bodies with direct and indirect relationships to the information technology in the health sector. In this section, we identify many of the White House entities involved in NII policy. We discuss 1) major councils and commissions, 2) the Chief Information Officers Council, 3) the Office of Science and Technology Policy, 4) the National Science and Technology Council, 5) The Large-scale Networking Working Group (LSNWG) and the Next-generation Internet, 6) the President's Committee of Advisors on Science and Technology (PCAST), 7) the President's Information Technology Advisory Committee (PITAC), and 8) the Federal Communication Commission (FCC).

Briefly, OSTP was established by the National Science and Technology Policy, Organization and Priorities Act of 1976. OSTP advises the President on all important science and technology policy issues and budgets. OSTP also works to achieve intergovernmental and public-private partnerships.

The National Science and Technology Council (NSTC) was established by Executive Order in 1993 to provide the administrative management channels needed to fulfill multiple national goals. This cabinet-level council has been the principal means for the President to coordinate science, space, and technology policies across the federal government. NSTC acts as a virtual agency for science and technology, coordinating the diverse parts of the federal research and development enterprise. NSTC has established a Committee on Technology that, in turn, established a Subcommittee on Computing, Information, and Communications R&D. The subcommittee established the LSNWG which provides crosscutting coordination for approximately $100 million annually for advanced researched projects. These projects are collectively referred to as the Next-generation Internet (NGI) Initiative. The NGI is a partnership between industry, academia, and government agencies that seeks to provide affordable, secure information delivery at rates thousands of times faster than is currently available.

The President's Committee of Advisors on Science and Technology (PCAST) was established by Executive Order at the same time as the NSTC. Committee members are appointed by the President and are drawn from industry, education, research institutions, and other non-governmental organizations. The formal link between PCAST and NSTC is intended to ensure that national need remains the overarching guide for NSTC. In a manner similar to PCAST, the President's Information Technology Advisory Committee (PITAC) advises the President in more detail on issues related to information technology.

Executive Order 13011 on Federal Information Technology issued in July of 1996, established a Chief Information Officers Council (the CIO Council) as the principal interagency forum to improve agency practices for the management of information technology. The CIO Council is one element of an interagency support structure established to achieve Information Resource Management (IRM) objectives delineated in the Government Performance and Results Act, the Paperwork Reduction Act of 1995 (PRA), and the Information Technology Management Reform Act of 1996 (ITMRA).¹⁰

Reports Focused on Health Applications

Reports and white papers that have guided the development of the NHII have addressed 1) public health data projects and systems, 2) the health of the public and the NII, 3) healthcare and the NII, 4) consumer health information, 5) networking health on the Internet, 6) interactive communication for health and well being, 7) health informatics, and 8) the online healthcare revolution.

The systematic review of health data systems in the context of rapid structural changes in healthcare delivery began in the first Bush Administration under Secretary of Health and Human Services Secretary Louis Sullivan. The Assistant Secretary of Health, Dr. James Mason, created The Task Force on State and Community Data that initiated a review of both existing and planned data resources. The Task Force submitted a report entitled, Inventory of Public Health Data Projects and Systems, to the incumbent Assistant Secretary of Health in October of 1993. The resulting inventory gave a thorough picture of all identified health data systems within the DHHS and some other federal entities as well. Some were found to be overlapping and in need of closer integration. Others were found to focus narrowly around a unique agency requirement. The inventory also identified resources that were of wide general purpose and needed to be accessible and widely distributed.¹¹

The conceptual origins of the NHII were largely defined by a series of federal government white papers. The vision for dramatically improving population health practices through advances in information management was clearly articulated in a groundbreaking 1995 report entitled, Making a Powerful Connection: The Health of the Public and the National Information Infrastructure, (Lasker et al). The report attributes the potential for improvement to major functional areas in public health practice that can benefit from the capabilities of the NII. The report’s focus is on three functional areas – data gathering and analysis, communication, and support in decision-making – giving seminal direction to the development of the health domain of the Internet.

Eight authors were asked by the White House Information Infrastructure Task Force (IITF) Committee on Applications and Technology, to write an introduction and white papers on applications of the NII in seven specific areas, one of which was healthcare. The goal was to focus public attention on a national vision of the opportunities for the public to receive the benefits of advanced computing and communications technologies through NII applications. Another goal was to improve public policy by identifying how the federal government can bring these benefits to the forefront when it is in the public interest. In 1996, more public dialogue was stimulated by Consumer Health Information, another IITF white paper. This paper defined consumer health information and its importance, set the expectations for the future federal role in the context of an information marketplace, focused on delivery and access issues at the community level, and analyzed the policy issues that needed resolution in this area.

In the fall of 1998, the NIH, acting through the National Library of Medicine (NLM), asked the Computer Science and Telecommunications Board (CSTB) of the National Research Council (NRC) to conduct a study to determine the requirements for the Internet to fully support the needs of the health sector of the United States. The CSTB final report entitled, Networking Health: Prescriptions for the Internet, provides an authoritative analysis of the technical, organizational and policy issues involved in advancing the ability of the Internet to support applications in consumer health, clinical care, financial and administrative transactions, public health, professional education, and biomedical research.¹²

In order to assess the role of information, communication, and computing technologies in the personal dimension of health, the Assistant Secretary for Health, Dr. David Satcher, convened an independent panel of experts called the Science Panel on Interactive Communication and Health (SciPICH). In 1999, the panel issued its report entitled, Wired for Health and Well Being: The Emergence of Interactive Health Communication (IHC). The report emphasizes the importance of the new technologies in facilitating health relationships by enhancing interactive communication between providers and their patients. We recommend that the NCVHS final report incorporate the recommendations in the SciPICH report. These applications use technology to further the general goals of health communication – inform, influence, and motivate individuals, populations, or organizations on health-related issues. The range of specific functions of IHC applications include relaying information,¹³ enabling informed decision-making,¹⁴ promoting healthy behaviors, promoting peer information exchange and emotional support,¹⁵ promoting self-care, and facilitating appropriate demand for and utilization of health services.¹⁶

Because of the HIPAA legislation, the department has new national leadership responsibility and expanded authority in the areas of data standardization, privacy and security. The department also has a mandate to improve the efficiency and effectiveness of health data programs. Pursuant to that mandate, useful planning and evaluation related to the federal governments health data needs was captured in a proposal for a DHHS Health Informatics Initiative for FY 2001 (HII 2001). The proposal, which we continue to endorse, would have produced a comprehensive directory of data systems and sources and an archive of collection activities.¹⁷ The DHHS currently identifies 212 departmental data resources, less than 5% of which pertain to human service data. About 20% track behavioral and environmental determinants of health but these are heavily concentrated in the field of nutrition and in no way reflect the breadth of factors required to make rational decisions about population health. The remaining 75% of the department’s data resources fall into the categories infectious agents, disease states, and medical treatments. These are related to specific, congressionally authorized, categorical grant-in-aid programs. In short, three-fourths of the department’s data collection efforts focus on one-tenth of the determinants of the population’s health.

Although this HII 2001 proposal was not included in the President's budget request, it remains an important guidepost. The proposal aimed to supply improved information for decision-making in all major domains of the health sector. The Initiative was planned along two strategic lines. The first was to strengthen and expand existing roles and investments. The second strategy was to explore areas that will be pivotal in next-generation health informatics. To address the department’s current deficiency in population health data, the FY 2001 Health Informatics Initiative proposed taking pioneering steps in three areas. We recommend that all three of these strategies be incorporated in the work plan of the new Health Information, Communication and Data Agency that we have proposed.

State-level population health models: First, HHS would fund state-level projects that apply new informatics and statistical techniques to model population health dynamics. These projects would analytically integrate data from a wide spectrum of sources including public health, health service delivery, human services, housing, and non-traditional sources such as criminal justice and transportation.

Linking health data with human service data: The second focus of the proposal was on linking health and human service information to one another. This would require new data sources and methods that would allow insight into the interactions between health services and human services.

Measuring discrimination: The final area in the HII proposal was the creation of new informatic methods to assess discrimination in the health field. Identifying discrimination is a particularly important step in the process of eliminating disparities in the access to quality healthcare services. This would have been part of an administration-wide effort to improve the measurement and tracking of discrimination.

Combined, these three steps would give the DHHS an unprecedented ability to understand the process of population health improvement and make decisions about policies and programs accordingly. We encourage the NCVHS to study and incorporate the central features of the HII 2001 proposal in its own roadmap for NHII development.

In November of 2000, The PEW Internet & American Life Project released a report titled, The Online Health Care Revolution: How the Web Helps Americans Take Better Care of Themselves. The report documents the Internet's powerful influence on "health seekers". Research sponsored by the foundation found that over fifty million American adults use the Web at least once a month to get health or medical information. This information affects decisions they make about their healthcare, their interactions with doctors,¹⁸ and to a lesser degree how they eat and exercise. About one-third say, the health information they find on the Web affects their decisions on behalf of a loved one. It also affects their decisions about whether or not to visit a doctor. For example, 91% of online health seekers have looked for material related to a physical illness and 26% have looked for mental health information.

Most users go to health sites for research and reference purposes.¹⁹ Few use it to communicate with their caregivers or to buy medicine. Most health seekers have been able to get the information they need without making the significant trade-offs of giving up personal information. Thus, it is not clear whether most Internet users will embrace a full range of healthcare activities online such as filling prescriptions, filing claims, participating in support groups, and e-mailing doctors. Online health seekers appreciate the convenience of being able to seek information at any hour, the fact that they can get a wealth of information online, and the fact that they can do research anonymously.

Best Practices in Health Information Infrastructure

The NCVHS commissioned papers on international best practices covering the contributions of Australia,²⁰ Canada,²¹ and the United Kingdom.²² We devote considerable attention to the health information issues related to Native Americans and Alaska Natives in the section of our paper about the Indian Health Service. We encourage the Committee to consider the Health Canada's Aboriginal Health Infostructure as part of their comparative analysis.²³

The contributions of private entities to health resources on the Internet come from proprietary firms, non-profit organizations, and individuals.²⁴ These resources primarily apply to the personal and provider health domains. Two types of offerings are prevalent: sites focused on delivery of knowledge from business to consumers and sites focused on support for professionals as they deliver health services to their patients.

In this section of the paper we identify some private sector sites that provide building blocks for a health domain within the NII. An example is the Internet Health Care Coalition²⁵ that promotes an "eHealth Code of Ethics" and offers a very useful site about the best practices for private Internet health sites. In the area of consumer health information, a source of confidential, authoritative, objective information is key. Several outstanding portals have provided impressive results. In our view, some of the best are operated by Kaiser Permanente²⁶ in association with Healthwise,²⁷ the Mayo Clinic,²⁸ and Aetna in association with Harvard.²⁹ "The Web has become an integral part of our healthcare system," said Joseph B. Martin, MD and PhD, dean of Harvard Medical School when he announced the university's participation in this Web portal. Dean Martin went on to emphasize that the medical school will use its Web presence to focus increased attention on the health issues facing under-served populations.³⁰ Sites to directly support frontline healthcare professionals are now emerging but are not as developed as the consumer-oriented sites.

Equally impressive is commitment of some healthcare providers such as the Intermountain Health Care and Kaiser Permanente to move to computer-based records for patient care. Their work on process definition is an important investment for their own organizations and will likely be followed by other health plans in the near future.

One of the most important areas of private sector innovation in the use of the NHII is chronic disease management and the use of Internet technology by nurse care managers to collect daily monitoring data about high-risk patients. Another private sector project that may help individual physicians get more involved is the partnership between the American Medical Association and Intel.³¹

Current Federal Resources

This section identifies a large number of federal agencies that are already participating in developing building blocks of the NHII. First we identify delivery and financing resources relating to personal medical services. Then we examine the resources available for population-based public health at the federal and state levels. We identify population-based resources by the agency in which they reside. Then we describe resources that relate to specific demographic cohorts. Our discussion of current resources concludes with a discussion of environmental health.

Health Delivery and Financing Resources

Federal healthcare delivery resources are concentrated in the Military Health Service System (MHSS), the Veterans Integrated Service Networks (VISNs) and the Indian Health Service (IHS). We examine their information infrastructures separately and then highlight a collaboration between the three agencies called the Government Computer-based Patient Record. HCFA has the predominant federal role in healthcare financing.

Military Health System, the Department of Defense

The drive that enabled public sector information technology as we know it today originated and developed substantially through defense technology programs, policy and leadership. These dynamic efforts became more broadly realized when defense technology began being applied to domestic and commercial goals through the dual-use mandate. The DoD information strategy for its Military Health Services System is based on the application of centrally-developed management principles that provide an excellent model for other government agencies with large health information requirements.³² The DoD’s information management policy supports comparable performance measurements across the military services and the private sector. Common functions are supported by single, integrated information management approaches consisting of uniform data sets, processes, and technical standards. This is an important area for coordination with the DHHS through the Office of the Secretary.

The Veteran's Health Administration

The Veterans' Health Administration (VHA) is the largest centrally-directed healthcare system in the country. It is made up of 172 medical centers; about 551 ambulatory and community based clinics, 131 nursing homes, and 40 domiciliaries. The Decentralized Hospital Computer Program (DHCP) of the early 1980's was modernized in the mid-1990's into the backbone called the Veterans' Information Systems and Technology Architecture (VistA) system. VistA, which combines over 130 applications, is a complex automated environment that supports the day-to-day operations of the VHA healthcare facilities. It includes links that allow the use of commercial off-the-shelf technologies.

Responding to the General Accounting Office (GAO) report which identified areas needing improvement, the Decision Support System (DSS) was implemented in July 1998. It is a medical center-based cost distribution program designed to produce management information for the VHA decision-makers.³³ The DSS provides outcome based measurement of healthcare delivery effectiveness.³⁴ Another VA project, a Smart Card proof-of-concept demonstration was conducted in August of 2000. This project has been designed so that repetitive processes such as filling out routine forms at each visit would be eliminated.³⁵ Major changes in the VHA management structure, capital funding, and system design comprise an optimistic picture moving into the new century.

The Indian Health Service, US Public Health Service

The IHS is unique in the way that it provides and contracts for direct personal and community health services. It uses information technology to deliver very personalized medical care. The IHS was a pioneer in the use of computer-based health records, telemedicine, and remote chronic disease management.³⁶ The IHS has a unique mission with complex requirements. We encourage the NCVHS to give this agency of the Public Health Service active support. In order to effectively apply the NCVHS vision to the IHS, we think the following areas need to be considered as keys to success for the IHS:

• health and resource disparities,
• leveraging human resources of the IHS with technology,
• integration of personal and tribal health,
• need for basic infrastructure,
• cultural aspects of information, communication, and relationships,
• building on current strengths, and
• collaboration with the Federal Communications Commission.

Native American and Alaska Native beneficiaries face disparities in their health status, funding, and resources.³⁷ Until the 1950’s, Indians experienced higher rates of gastro-intestinal diseases than all other races in the United States. The IHS Initiative reduced this condition to parity by providing clean, hot water, toilets and other sanitation needs. This success story demonstrates the value of the IHS approach of integrating community-based based population health and personal medical services. Indians have higher rates of several chronic conditions and diseases associated with a Western lifestyle such as obesity and diabetes.

Alaska Native tribe who live under extreme conditions operate what we refer to as relationship-based healthcare. In the cradle-to-grave environment of remote villages, tribal languages are very important. Interpersonal relationships based on integrity and trust preserve confidentiality and privacy more effectively than enabling technologies.³⁸

We recommend that the NCVHS address the lack of telephone service on tribal trust lands which prevents communication with health services. This is a serious and unacceptable infrastructure deficit.³⁹ The IHS has an urgent need for new, additional investment in health information and communication systems as well as in intellectual capital. Priorities should include establishing a basic infrastructure that will enable more advanced data functions. Ongoing training of existing personnel to take optimal advantage of information technology and recruitment of specialized staff is also a must. Integration of internal and external data systems through standardization is critical for quality assurance. All of these important objectives require continued outreach to the tribes the IHS works with and serves.

The IHS created the Division of Information Resources (DIR) and supports it with the Information Technology Center. One example of a valuable service it performs is the Find an IHS Facility Program which directs people to appropriate products and services. The DIR also has a Web team that provides application, component, and Website design and development to the agencies of the IHS. The Chief Information Officer provides executive leadership to the division while the Information Technology Support Center supplies field operation and support for the division.

Indian healthcare needs cannot be met without an adequate communication infrastructure. To this end, the FCC has started several Indian Telecommunications Initiatives. Many tribes live in an environment of relative isolation. The 1996 Telecommunications Act includes an effort to bring telecommunication services to unserved people and under-served areas, including tribal lands. This endeavor consists of several Initiatives. The Indian Telecom Training Initiative was an educational seminar designed to provide tribal residents with information about telecommunication services and to improve their decision-making capability. Two other programs, Link-Up America and Lifeline Assistance Program, provide financial assistance to low-income members of the Tribes.

Combined Activity: The Government Computer-based Patient Record

The Department of Defense, the Veteran’s Health Administration and the Indian Health Service are partnering to develop a unified computer-based medical record. The project known as the Government Computer-based Patient Record (GCPR) will develop common standards for medical records within all three organizations. The GCPR project is expected to provide a permanent, flexible, confidential system that will not require an overhaul as computing platforms and standards evolve. These lifetime medical records will resolve problems created when individuals are treated by more than one of these services thus providing integration between the personal and provider health domains.

Because the IHS has many similarities to the VA, the GCPR framework will allow them to leverage the advanced technology already developed by the VA and adapt it for the IHS's own Resource and Patient Management System. With an information system core based on the VA’s clinical modules, the IHS will then be able to augment clinical records with elements that place more emphasis on community, environmental, and behavioral aspects of prevention. The GCPR framework will also help maintain compatibility between IHS data and the data coming from tribes that choose to operate their own healthcare programs with funding from the Indian Health Service. The IHS also has productive partnering initiatives with private industry and universities. These relationships are critical to the growth and maturation of the IHS information infrastructure.

The Health Care Financing Administration

The Health Care Finance Administration (HCFA) collects financial, encounter, and population data and increasingly administers claims electronically. As the nation's largest healthcare insurer, HCFA needs effective information management to achieve its mission while meeting the demand for greater data analysis and reporting. HCFA maintains large data resources and compiles the data it collects into useful statistics. These include actuarial publications,⁴⁰ Medicare information,⁴¹ practice expense and reimbursement data,^41b and other HCFA statistical publications.⁴² The importance of this vast network of data gathering and statistical analysis cannot be overstated.

In 1997, HCFA developed a strategy to support an enterprise-wide approach to their mission and business functions. Their focus shifted from operational goals such as improved business efficiency and beneficiary service to improving program outcomes.⁴³ HCFA's new Information Technology Architecture (ITA) provides timely access to accurate, relevant information across the full range of agency-administered health programs.⁴⁴

HCFA focuses its contribution to the NHII mainly in the health provider domain and especially with information for health plans. It also contributes to the personal health domain by helping consumers understand their options as beneficiaries of health insurance. HCFA increasingly emphasizes the use of information services as an essential ingredient in beneficiary-centered programs. HCFA contributes to the personal health domain by helping consumers understand their options⁴⁵ through their Website, www.medicare.gov.⁴⁶ HCFA provides an online National Medicare Education Program so beneficiaries can be better informed when selecting a health plan. In a secondary way, HCFA contributes to the community health domain because the data it collects is used by third parties for population health analyses. The Research Data Assistance Center (ResDAC) was formed to allow researchers to gain access and understanding of the Medicare and Medicaid data that is available. It provides training and a number of activities to assist researchers.

Agencies Providing Population Health Resources

In this section we describe and discuss current and potential population-based public health data systems in the Office of the Secretary of the DHHS and agencies of the USPHS. With its nine component agencies, the USPHS has emerged as the federal organization with the most untapped potential to guide the development of the Internet in the direction of population health. In order to fulfill this potential, the USPHS must tightly integrate its own initiatives, synchronize with other agencies in the Department of Health and Human Services, collaborate with other Cabinet departments government wide, extend its reach to each community in America through state and local channels, and work side-by-side with a broad consortium of private partners.

Office of the Secretary, DHHS

In the Office of the Secretary, the leadership for health information policies is centered in the Office of Public Health and Science and with the Data Policy Council within the Office of the Assistant Secretary for Planning and Evaluation. The Office of Public Health and Science (OPHS) has provided the early vision and leadership in creating the public/private collaboration that is currently underway to create the NHII. The OPHS Office of Disease Prevention and Health Promotion developed the much celebrated healthfinder® Web site that is arguably the jumping off point for the personal domain of the NHII.⁴⁷ The OPHS also coordinates the bio-terrorism initiatives of the Public Health Service through its Office of Emergency Preparedness. Two demographic groups have special program offices in the OPHS: women and minorities.

The popular healthfinder® site⁴⁸ is operated by the DHHS, in collaboration with other federal agencies. It is a free gateway to reliable consumer health and human services information developed by agencies within the DHHS. The healthfinder® search results are sorted into Web resources⁴⁹ and organizations.⁵⁰ Details are available for every resource or organization, and it’s easy to search for related resources from any detail page.⁵¹

The public health and medical response to bio-terrorism is an area of responsibility for the Assistant Secretary for Health and the Assistant Secretary for Planning and Evaluation in the Department of Health and Human Services. The Office of Emergency Preparedness for the DHHS reports to the Assistant Secretary for Health. It also involves the White House, particularly the National Security Advisor and the Federal Emergency Management Agency, the DoD, the VA and various public health operating divisions including the CDC, the FDA and HRSA. In times of emergency, the NHII must provide effective, efficient, and secure transfer of information between federal, state, and local participants as they respond to any emergency, including natural disasters, terrorist attacks, and war. Congress has provided funding to the CDC to begin the development of an information system capable of monitoring for infectious agents and responding to a bio-terrorist incident. The Health Alert Network is a critical part of this response capability. The President's National Security Telecommunications Advisory Committee (NSTAC), comprised of senior representatives from the leading industry providers of information services, established an NII Task Force to advise the President of its perspectives on the NII and make appropriate recommendations on improving responsiveness and reliability.

Operating Divisions, DHHS

The operating divisions of the DHHS that provide population health data resources are primarily within the USPHS. These include (1) the CDC, (2) the AHRQ, (3) the NIH, (4) HRSA, and (5) SAMHSA.

The Centers for Disease Control and Prevention

The CDC contains the largest repository of data related to health and disease in the DHHS with over 115 major data resources. The National Center for Health Statistics (NCHS) is the federal government’s principal health statistics agency. The NCHS, which is a part of the CDC, has a charter that has developed over a period of over 40 years.⁵² Today, the NCHS mandate from Congress addresses the full spectrum of concerns in the health field from birth to death. This includes overall health status, life style and exposure to unhealthful influences, and the onset and diagnosis of illness and disability. Additionally, the mandate includes the use and financing of healthcare and rehabilitation services. The NCHS works closely with other federal agencies as well as researchers and academic institutions. The NCHS data is used extensively by policymakers in Congress and the Administration as well as medical researchers and others in the health community.

Although the NCHS is the primary source of statistical data for the community health domain, many CDC data systems scan only the provider domain and not the broader communities. Major improvement is needed if the NCVHS vision for a comprehensive community health domain is to be realized. To be effective, population health efforts must be implemented at the community level. The primary channel for this work is through the intergovernmental efforts of the Public Health Service. The CDC also manages the majority of intergovernmental health information activity related to population health. The CDC provides a direct distribution channel through its Public Health Practice Office to state, local and industry leaders.⁵³ The CDC’s intergovernmental programs strengthen the public health system by translating the essential public health services into local capabilities. A central thrust of the NCHII needs to aimed at improving the effectiveness of those local activities.

The Agency for Healthcare Research and Quality

The Agency for Healthcare Research and Quality (AHRQ) develops and disseminates research-based information to increase the scientific knowledge needed to enhance consumer and clinical decision-making, improve healthcare quality, and promote efficiency in the organization of public and private systems of healthcare delivery, and assist healthcare policymakers at all levels of government jurisdiction. The National Guideline Clearinghouse and The Integrated Delivery System Research Network are two important AHRQ projects that contribute to the use of the NHII by doctors, health plans, and other healthcare providers.

Internet technology has made it possible to provide rapid access to the latest information on medical treatment.⁵⁴ Through a groundbreaking public-private consortium, the National Guideline Clearinghouse is developing that possibility into a growing reality.⁵⁵ The collaborating organizations – the American Medical Association (AMA), the American Association of Health Plans (AAHP) and the Agency for Healthcare Research and Quality – each bring distinctive capabilities to the task of establishing a comprehensive Internet-based source for clinical practice guidelines.⁵⁶

The Integrated Delivery System Research Network (IDSRN) is another important AHRQ sponsored resource. The profound change that the US healthcare system is undergoing is reflected in the forming, consolidating, and expanding of integrated delivery systems such as Managed Care Organizations (MCOs). These providers are attempting to reduce costs while maintaining or improving care. In order to conduct and disseminate research information pertinent to the functioning of these integrated systems, the AHRQ, in partnership with these systems, has created the IDSRN⁵⁷ to monitor how these system changes affect care, access, cost, and quality.⁵⁸ An additional IDSRN program will assess and improve the healthcare system’s capacity to respond to possible incidents of bio-terrorism.⁵⁹

The User Liaison Program (ULP), established in 1978, contributes to the AHRQ's mission by synthesizing and distributing research results to local, state, and federal health policymakers – users of such research. Their concerns include the design, delivery, quality, evaluation, and financing of health services.⁶⁰

The National Institutes of Health and the role of the National Library of Medicine

The NIH is a group of 25 separate institutes and centers, each of which has an impressive Web presence. The best expertise in the world in fields such as cancer, heart disease, HIV/AIDS, and diabetes are accessible from NIH Websites. Resources from the sites of individual institutes and centers target a range of users from staff scientists and extramural researchers to patients who are clinical trial participants and the public. Many of the NIH sites are useful for goal-directed work as well as information gathering. One example is the National Heart, Lung, and Blood Institute's (NHLBI) Healthy People 2010 gateway that brings together a large number of diverse stakeholders in specific NHLBI focus areas.

The Library of Medicine resides within the NIH and has provided leadership for the NHII. Donald A.B. Lindberg, MD, Director, National Library of Medicine stated in testimony to Congress that the NLM has re-engineered its information services and immense databanks to directly benefit both health professionals and the Web-using public. Popular NLM resources include MEDLINE,⁶¹ and ClinicalTrials.gov.⁶² An additional NLM strategy is a project to improve access by encouraging medical libraries to work with local public libraries and other community organizations.⁶³ NLM also invests in programs that target specific health disparities by developing information that is part of the community health domain.⁶⁴ The NLM also invests heavily in medical informatics, biological modeling,⁶⁵ Internet supports for genome research,⁶⁶ and technical assistance to researchers worldwide.⁶⁷ It also helps manage the health applications research of the Next-generation Internet Initiative.⁶⁸

From an operational point of view, the NIH provides a good model for other agencies in the use of the Web to support information resource management. Their Center for Information Technology (CIT) has site that offers a comprehensive directory of information technology resources and services for entities within the NIH. The CIT provides the NIH staff with one-stop shopping for practical needs such as data warehousing, pagers, domain name registration, software distribution, training, and videocasting.

Health Resources and Services Administration

The information and communication program of HRSA is focused primarily in the provider health domain. HRSA's track record of supporting the development of the NHII shows mixed results. HRSA's management of the National Practitioner Data Bank (NPDB) was found to be seriously flawed by the General Accounting Office (GAO). The NPDB is the US government’s data warehouse of disciplinary records and malpractice actions against physicians and other healthcare practitioners. On the other hand, HRSA has successfully played a leadership role in addressing the telemedicine need of rural hospitals. HRSA has also pioneered the concept of "tele-health" as a complement to telemedicine.

Much of HRSA’s contribution to the NHII is in the planning phase. The goal is to utilize advanced technologies to further the mission of the department.⁶⁹ In partnership with other agencies, HRSA examines ways of integrating health, human service, and community resource data. This has led to innovative ways of improving and extending life for people living with HIV/AIDS. HRSA needs to reinvent its approach to providing primary healthcare in medically under-served areas. In doing so, the concept of communication-based delivery through tele-medicine and tele-health should be given more emphasis and funding than they have received to date, particularly for programs at the community level. With Welfare reform, the role of government has been re-conceptualized from an entitlement provider to a facilitator of empowerment. However, HRSA has yet to use the leverage of information and communication to better serve women and children through state programs. Finally, HRSA needs to develop and implement a complete plan to realize the promise of distance-learning in its programs that seek to train a health workforce that is both diverse and motivated to work in under-served communities.

Substance Abuse and Mental Health Services Administration

The current effort to use advanced information and communication technologies within SAMHSA is in the planning phase. The goal of this planning effort is to advance the causes stated in the agency’s mission statement. SAMHSA's mission within the nation's health system is to improve the quality and availability of prevention, treatment, and rehabilitation services. The goal is to reduce illness, death, disability, and cost to society resulting from substance abuse and mental illnesses.

As SAMHSA pursues its part in the development of the NHII, several general principles are particularly applicable. (1) SAMHSA's mission is accomplished in partnership with all other agencies concerned with substance abuse and mental illnesses. Therefore, the agency’s Web strategy should be collaborative, integrated, diversified, and should act as a catalyst for relationships among stakeholders. (2) SAMHSA exercises leadership in eliminating the stigma that impedes prevention, treatment, and rehabilitation services for individuals with substance abuse and mental illnesses. This work requires an approach to information infrastructure that emphasizes communication among people above and beyond mere data transfer and analysis. (3) A significant portion of SAMHSA’s strategic funding to increase the effectiveness, availability, and accessibility of services should be directed toward enabling a richer, more continuous relationship between service providers and their clients through Internet-based communication systems. (4) The agency’s efforts at promoting quality standards for service delivery should be based on the principles of management by exception and mass customization. These methodologies have been pioneered by innovators in computation and database management. Finally, (5) SAMHSA’s efforts to develop and promote models and strategies for training and education should fully incorporate the benefits of distance learning that has proven to be successful in other health and human service domains.

State Health Information Infrastructure Development

Toward a National Health Information Infrastructure discusses anticipated state-level features and benefits of the NHII . In the "Community Health Dimension (CHD)" section of the interim report it is observed that the NHII is not a single database but rather is composed of diverse federal, state, and local information systems. The interim report emphasizes the need for greater integration vertically and horizontally. It asserts that the NHII will provide federal, state and local public health agencies the tools to improve the overall health of Americans by providing information about trends in health risks, diseases, and other factors affecting community health.

In our view, the state level of health information infrastructure bridges between national policy needs and local program needs. We suggest that the final report give focused attention to state-level development of the NHII, particularly as it impacts local communities. We examine three areas that should be given priority: 1) state-level emergency preparedness, 2) investment in integrated state health information systems, and 3) a registry of state-level data integration activity.

A primary relationship in the national system of emergency preparedness is between the states and Centers for Disease Control. In this situation, the CDC’s responsibility to be able to react to natural disasters or criminal attacks on our environment rests mostly on the preparedness of the states and the success of the linkage connecting the two. Detailed data on local conditions such as population size, location, socio-economic status and related demographics are needed by the CDC to mobilize the resources needed to identify the problem as precisely as possible and work with state and local communities to counteract the emergency situations.

The emergency functions of the USPHS should be incorporated in the bandwidth allocated for national defense purposes and, as such, provide a protected channel of communication. In order to use the budget allocated for emergency functions most efficiently, advanced technology must be used to maximize effectiveness of the data collection and collation, increase speed of transmission and to increase the access points to the data input. The states, correspondingly, must have the organizational and technological infrastructure to respond to the needs of the CDC.

One function of the AHRQ's User Liaison Program is to assist states seeking to integrate the health data resources and processes. State and local policymakers use different models of integrated health information systems to support program management and public policy development. We recommend that the federal government work with state's to identify a limited number of such models (we suggest three to four) to be developed for replication with the help of federal funds.

Many of the public and private organizations that comprise the healthcare marketplace collect health information. As the health information needs of these organizations have grown, health data sets have proliferated that are often overlapping, inconsistent, incomplete, or redundant. These problems, together with recent and ongoing advances in technological capacity to manage information, have spurred some states to begin to b