Testimony by Philip Lee for October 30, 2000 NCVHS Joint Hearings

10/30/2000

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

Prepared to supplement
the October 30th, 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 21st 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 21st 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 21st 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 21st 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

 

 

1

2

3

4

5

Budget Year

FY 2002

FY 2003

FY 2004

FY 2005

FY 2006

White House

$ 7.5

$ 8.0

$ 8.5

$ 9.1

$ 9.7

DHHS-OS*

50.0

53.3

56.7

60.4

64.3

HICDA**

100.0

106.5

113.4

120.8

128.7

OPDIVs***

250.0

399.4

532.6

567.2

604.1

Other Dept.’s

200.0

266.3

319.5

340.3

362.5

State

50.0

106.5

159.8

213.0

266.3

Local

4.5

9.6

14.4

19.2

24.0

NGO's****

2.0

4.3

6.4

8.5

10.7

TOTAL

$ 662.0

$ 949.5

$1,204.9

$1,330.0

$1,459.6

 

 

 

 

 

 

Year

6

7

8

9

10

Budget Year

FY 2007

FY 2008

FY 2009

FY 2010

FY 2011

White House

$ 10.3

$ 10.9

$ 11.7

$ 12.4

$ 13.2

DHHS-OS

68.5

73.0

77.8

82.8

88.2

HICDA

137.1

146.0

155.5

165.6

176.4

OPDIVs

643.5

685.4

623.5

557.6

487.3

Other Dept.’s

386.1

411.2

390.1

367.5

341.0

State

319.5

372.8

397.1

422.9

450.4

Local

28.8

33.6

38.3

43.1

47.9

NGO's

12.8

14.9

17.0

19.2

21.3

TOTAL

$ 1,593.7

$1,732.9

$1,693.8

$1,652.0

$1,604.5

 

 

* 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

 

 

Table #2: Proposed NHII Distribution Destinations

 

sum of 10 year projection

White House

$101.3

DHHS-OS*

675.0

HICDA**

1,350.1

OPDIVs***

5,350.5

Other Dept.’s

3,384.5

State

2,758.3

Local

263.3

NGO's****

117.0

TOTAL

$14,000.0

 

 

* 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 20th, 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 build integrated health information systems. The integrated systems that these states are developing compile health information in a standardized manner and allow electronic access by multiple users for multiple purposes. These purposes include the oversight and management of public health, monitoring healthcare outcomes and quality, and managing state Medicaid programs. An additional function of integrated health information systems is to promote competition in ways that help control healthcare costs. The prospect of developing and maintaining integrated health information systems challenges the traditional roles and relationships among state agencies. Before an integration process takes place more than one department will have overlapping responsibility for the same area. In the process of integration this type of costly redundancy is eliminated by clarifying roles. Moreover, effectively addressing healthcare quality, access, and cost often entails forging information-sharing partnerships with private-sector organizations, including large purchaser organizations. This type of information sharing among public agencies and across private-public boundaries raises important real and perceived problems of confidentiality that are not easy to address.

Another point of contact between the states and the federal government is the inventory of the states’ systems integration capabilities and related functions. The inventory is maintained by DHHS. The states’ data systems are important mechanisms by which the states monitor, regulate and enhance the population's health needs. HHS conducted a study that created a registry of state-level efforts to integrate health information. The registry provides federal policy makers a central source for researching state integration activities. It is clear from the inventory that there is a wide range of data sophistication across the 50 states. The most ambitious integration efforts are in Texas, Colorado, California, Alabama and Mississippi. Each of these states has at least ten different major data integration efforts underway within their health departments. Funding appears to be a problem in states where there is very little integration activity underway.

Crosscutting Resources Providing Models for the Future

Shaping a Vision for the 21st Century Health Statistics calls for collaboration around a new framework of health information. In order to succeed at implementing this goal, we recommend that the NCVHS final report focus on ways to foster crosscutting population health data resources.

A very important national goal is to eliminate health disparities among segments of the population. The main demographic categories we recommend using are 1) age, 2) gender, 3) race and ethnicity, 4) education and income, 5) occupation, 6) disability, 7) geographic location, and 8) sexual orientation. The determinants of health model require demographically rich statistics in order to be meaningful. The Federal Interagency Council on Statistical Policy web site provides easy access to the full range of statistics and information produced by more than 70 US government agencies. This includes Web-based policy analysis and population databases.

One important resource is the Demography Home Page. This Website is part of an initiative to identify, document and provide simple access to demographic information concerning the United States. Resources include public micro date samples, current population surveys, economic census data, social and environmental databases, city and county business and demographic data and county to county immigration patterns.

The healthfinder® site covers over 1,000 topics, but the sites Just for You feature narrows things down to the ones that mean the most to each individual user. There is a mini-healthfinder® for each age group, as well as for men, women, minority health, and health professionals. Each one has its own hot topics, news, smart choices, etc. The latest addition to this section is healthfinder®español, with hundreds of links to Spanish language resources.

The following section provides background on the relative progress toward developing the needed data resources for select priority population sub-group s We do not include data resources relating to education and income, occupation, geographic location or secular orientation.

Children and Youth

The Federal Interagency Forum on Child and Family Statistics has created a Website containing all pertinent statistics on children and family that has been collected on the federal and state levels.70

The Think Website, created by Advanced Networks and Services, Inc. is an interesting example of an innovative private sector contribution to teen health education. It brings information on such topics as addiction, nutrition, hygiene and sports to teens who integrate it into their curriculum.

The Bureau of Maternal and Child Health (BMCH) in the HRSA funds a wide variety of information resources for the public. The BMCH funds many independent organizations that are each focused on one area of maternal and child health. Of the approximately 20 different resource sites examples include:

  • Hotline for Expectant Mothers
  • SIDS
  • Pediatric Pulmonary Centers
  • Women's Health Information Issues

Children’s health is an area where America can make its vast health information infrastructure available internationally. A US effort to address international child health issues needs to be aligned with the WHO efforts in this area.71

Women

The National Women's Health Resource Center makes objective information available to assist women in making informed decisions about their health. Partnering with corporations, government agencies and other non-profit groups, they have sponsored a national public education initiative on a full spectrum of women's health and wellness issues. An example of a Website using a determinants of health framework is the CDC's Women's Health site. This site provides an example of health communication based on a determinants of health framework.72

The Family

healthfinder®, the US Government sponsored gateway for consumer health information, provides links to 18 Web resources about subjects such as "adopting a child with special needs" and "answers to children's questions about adoption." healthfinder® also provides links to 12 organizations that can assist families with adoption issues. One example, Breastfeeding.com, a privately-owned site, is the most comprehensive location about this subject on the World Wide Web. The National Clearinghouse on Family Violence is a Canadian example of a public Web resource for families. The National Clearinghouse on Family Violence (NCFV) of Health Canada offers an information and referral service on issues related to family violence, to professionals, and to the general public.73

The Elderly

The Federal Interagency Forum on Aging-Related Statistics incorporates age-related statistics from nine federal agencies. It has created a venue for discussion on ways these agencies can improve their services to the elderly population. It provides an excellent model for data integration activities on an administration-wide basis.74

The Longitudinal Studies of Aging (LSOA) is an interagency collaboration involving aging statistics.75 This family of surveys is designed to measure changes in health status, health-related behaviors, healthcare utilization, and the causes and consequences of these changes within and across two cohorts of elderly Americans.76

The NCHS electronic data warehouse on Trends in Health and Aging, provides a consolidated source for up-to-date information on the health of older Americans. This site was developed by NCHS with the support of the National Institute on Aging. This site is specifically designed to show trends in health-related behaviors, health status, healthcare utilization, and cost of care for the older population in the United States.

Minorities

The Deputy Assistant Secretary for Minority Health (OMH) advises the Secretary and the Office of Public Health and Science (OPHS) on public health issues affecting ethnic and religious minorities. In 1998, the President announced the Initiative to Eliminate Racial and Ethnic Disparities in Health making this issue a national priority. The congress, in a bi-partisan effort, funded this initiative to eliminate health disparities. The OMH offers oversight to ensure that federal, state, and local communities take into account the needs of these disadvantaged populations. Collaborating with HHS divisions and other federal agencies to improve data collection, the OMH monitors and reports on the progress of Healthy People 2010 in eliminating minority disparities in health.77 In 1987, OMH established the Office of Minority Health Resource Center (OMHRC) to meet the public's need for reliable, accurate, and timely information and technical assistance on issues affecting the health of minority populations. Since that time, OMHRC has grown to become one of the nation's largest sources of minority health information.78 In addition, new staff has been added to the OMHRC to take on additional projects including developing Web pages specific to HIV/AIDS.79

People with Disabilities

The Americans with Disabilities Act (ADA) has resulted in many changes in access to employment, to public accommodations, and to other features of the built environment, but it has lagged behind in creating access to the rapidly changing electronic environment. Sections 255 of the Telecommunications Act of 1996 and Section 508 of the Rehabilitation Act of 1973, as amended, are the two most significant legislative measures that address this realm. They have the potential to ensure that people with disabilities will have full access to the information tools that others rely on for more productive lives.

Access to the Web for people with disabilities has two major dimensions. The first is technical. Tim Berners-Lee, one of the inventors of the WWW, once stated that its power was in its universality. Everyone, regardless of disability, would have access. This vision, while well intended, has yet to be fulfilled. The intent was to address people with physical disabilities. Progress is being made toward "universal design" solutions that make it technically feasible for everyone to use the Internet technology. People unable to use their extremities, as well as those with visual and auditory impairment, can function with proper training and modified equipment. This, however, is not the only place where the problems of access lie. The major issues of inaccessibility for people with disabilities are socio-economic and cultural as well as technical. The disabled population as a whole suffers a lower socio-economic status than the general population. Thus the detrimental impacts of low socio-economic status, including reduced access to technology, fall disproportionately on the disabled.80

First issued by the World Health Organization in 1980, The International Classification of Functioning and Disability (ICIDH) has appeared in 15 languages and its three-part structure has been accepted worldwide as providing both a scientific model of disability and the basis for a common language for clinical use, data collection, and research. In 1955, in response to international calls for its revision, WHO began a consensus-based process that will culminate with the 2001 issuance of ICIDH-2.81

Environmental Health Information Infrastructure

The interim reports acknowledge the impact of environmental exposures on health status and the need for environmental health information. However, little is said in either report about the actions that need to be taken to develop an environmental component of the NHII. We recommend that the final reports include an expanded analysis of requirements for data and information infrastructure in the environmental health field.

Environmental factors are tracked in two ways. The approach that is common in the international arena involves complex multi-factoral models for healthy communities and global environmental health. The US model focuses on the physical/chemical environment, particularly by-products of consumerism and industry. These variables include air quality, water quality, toxins and waste, and risks in the home. Some of the core resources and initial data integration activities needed to provide a basis for developing a successful environmental health tracking system are distributed across a diverse set of agencies. However, there is a strong consensus that the health effects of environmental factors are not adequately monitored in the US today. This is documented by the PEW Environmental Health Commission. Recent findings by the PEW Foundation highlight areas of population health that mandate direct and immediate intervention.

This PEW 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. Four chronic conditions result in 70% of the preventable premature mortality in the US each year. The burden of detrimental environmental health effects needs to be addressed on an urgent basis. 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.

Environmental Health Information Infrastructure within the Public Health Service

Within the Centers for Disease Control and Prevention there are three organizational units that address environmental health: 1) the National Center for Environmental Health,82 2) the National Institute for Occupational Safety and Health, and 3) National Center for Health Statistics. The CDC performs many of the administrative functions for the Agency for Toxic Substances and Disease Registry (ATSDR).83 The ATSDR is a sister agency of the CDC84 within the DHHS. Like the CDC, the ATSDR is heavily involved in data collection, analysis and dissemination.

Inside the USPHS, other entities have responsibilities that are important to the NHII in the composition of an environmental health component. These include the Food and Drug Administration,85 the Indian Health Service's Office of Environmental Health and Engineering, and the National Institutes of Health.86

Environmental Health Information Infrastructure in Other Federal Agencies

At the federal level there are at least eight agencies outside of the DHHS dealing with environmental health. 1) The US Environmental Protection Agency (EPA) is an independent agency that enforces federal environmental statutes. 2) The Occupational Safety and Health Administration (OSHA) in the Department of Labor is the federal agency with primary responsibility for worker safety and health. 3) The National Transportation Safety Board87 (NTSB) is an independent federal agency that investigates transportation accidents. 4) The US Consumer Product Safety Commission88 (CPSC) is an independent federal regulatory agency that regulates consumer product safety. 5) The Chemical Safety and Hazard Investigation Board (CSB) is an independent agency that investigates causes of chemical incidents and identifies means of prevention.89 6) The Department of Housing and Urban Development (HUD) is involved with abating the effects of lead in paint and plumbing. 7) The Department of Energy (DOE) has a wide range of environmental health programs including: DOE worker health, environment health science and technology, and food safety. 8) The Bureau of Alcohol, Tobacco and Firearms (BATF)90 is within the US Treasury and regulates interstate transport of these three products.

Partnering in Environmental Health

Among the critical partnerships needed to build a comprehensive environmental health information infrastructure are the following: 1) NIEHS partnerships, 2) Chemical Safety Board partnerships, and 3) Environmental Protection Agency partnerships with states. Also, key to an environmental health information infrastructure is agreement on federal and state roles in occupational safety and the inclusion of information infrastructure requirements in occupational safety and health "state plans".91

The interdisciplinary nature of environmental problems requires a partnership of disciplines to solve them: epidemiology, toxicology, medical science, economics and other specialties all have their own special contributions to make. NIEHS takes the lead in developing collaborations92 to enhance research and ensure that this work directly reflects the needs of the public.93The NIEHS Environmental Genome Project is an example of multi-disciplinary, collaborative effort, involving several other NIH institutes as well as the Department of Energy (DOE) and other federal agencies.94

Community outreach is another area in the environmental health field where partnering is critical to success. The NIEHS uses a variety of award mechanisms to accomplish its mission of studying the mechanisms and effects of environmental agents on human health. Among theses are the Environmental Health Sciences Center Grants. NIEHS Centers are required to develop and maintain community outreach and education activities.95

Environmental Health is an example of a component that needs to be clearly established within the "Community Domain" of the NHII. A step toward resolving that lack of coherence in environmental public health reporting is the working relationship between the United States Chemical Safety and Hazard Investigation Board (CSB) and the United States Environmental Protection Agency (EPA). The collaboration between these two independent agencies is focused in the area of accidental chemical releases. This includes emergency response, investigations, prevention, and research.96 Other CSB partnerships are with OSHA97 and with ATSDR.98

EPA's One-Stop Reporting Program's mission, as announced by President Clinton in March 1995, is to reinvent environmental reporting to accomplish three goals: to reduce industry reporting burden, foster multimedia and geographic approaches to environmental problem solving, and provide the public meaningful, real-time access to environmental information. While EPA is pursuing these goals through a variety of programs and initiatives, the One-Stop Reporting Program strategy is unique. Recognizing the importance of states as primary collectors and stewards of environmental data, the One-Stop Reporting Program is partnering with states to jointly implement full-scale reporting and data management reforms.99

In addition to programs delegated by federal environmental protection statutes, many state environmental agencies also incorporate natural resource programs. The Environmental Council of the States (ECOS)100 and the US Environmental Protection Agency (EPA) have a partnership agreement to build locally and nationally accessible, environmental information systems. This effort builds on the ECOS cooperative agreement with EPA to jointly work on a national environmental data system through EPA's One-Stop Reporting Program.101

Recommendation for an Environmental Health Tracking System

PEW Environmental Health Commission sees an urgent need for a federally-sponsored national tracking system that can locate, identify and measure environmental exposures that correspond to chronic diseases in the population. 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. This network would be comprised of the following 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 environmental health 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 expansion of the capabilities of the NHII.

Strategies for the Future

The concept of combining health statistics strategies and health information infrastructure strategies under the umbrella of "Information for Health Strategies" was introduced by Dr. Don Detmer at the 50th Anniversary Symposium for the NCVHS. Health statistics fuel the creation of information and knowledge that are put to practical use through the information infrastructure. Hence, the design of both the 21st Century health statistics and the NHII need to be based on the same framework. We support the working group on health statistics of the Working Group on Health Statistics view that this framework be built around the determinants of health – both simple and complex. We encourage the Working Groups to consider in more detail how this framework can be implemented.

Developing the National Health Information Infrastructure

Section 5 of Toward a National Health Information Infrastructure describes in detail the Committee's vision for how the NHII will be structured. This section of the interim report sets forth a comprehensive vision for the best strategic use of information technologies for health and healthcare. It indicates that a broad consensus has been formed for an overall health information framework for the nation. The central concept of the NCVHS vision for the NHII is that it should be comprehensive and integrated. To achieve this, the NCVHS calls for a framework that is organized into three overlapping but distinct domains – personal, provider, and community. Some aspects of the NCVHS domain model are more developed more than others. Many of the principles that the NCVHS sees as central to the success of 21st Century health statistics can also be applied to the NHII.

Toward a National Health Information Infrastructure does a good job of defining and describing infrastructure. A function of the NHII is to connect distributed health data within the framework of a secure network. Even though the NHII does not yet exist in a comprehensive way, many important component systems are already usable. Others have yet to reach a sufficient level of planning to allow successful implementation.

The Working Group on the NHII refers to the NHII as a set of technologies, applications, systems, values, and laws. Internet technology provides 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 technical equipment including cameras, telephones, microwave nets, televisions, fiber optic cable, fax machines, transmission lines. Important issues in the areas of technology, applications, systems, and values must be addressed for the potential of the NHII to be fulfilled.

The interim reports recognize two important trends in technology that we want to highlight and reinforce. First, security technology must be implemented to assure that health information can safely travel over the Internet. Second, new devices that are mobile and integrate multiple modes (including data, text, and voice) and multiple functions (such as information searching and communication) make many new and innovative health applications feasible.

Three types of domain-specific applications are particularly important for the NHII. We limit our discussion of computer-based patient record applications to the "government computer-based patient record" or GCPR. In the field of remote healthcare applications, we point the Working Group’s attention toward recent promising developments chronic disease management. Progressive healthcare companies and Internet technology companies working together have successfully demonstrated that daily monitoring and patient-nurse communication lead to fewer complications and emergencies. We refer to the third application area as a Public Health toolkit. Public health will need to include in its toolkit applications that can integrate data, produce high-quality community-level data, identify significant health trends in real-time, and display geographic information graphically.

The NHII is an interoperable "systems of systems" each of which needs to be interoperable. An example of system interoperability occurs when an emergency preparedness and response logistical system receive input from a real-time disease surveillance systems so that the logistics output can properly guide resource deployment. Registry systems and survey systems are further examples of where data producing system needs clear linkages to the information infrastructure supporting community level health services.

Collective values drive both policy goals (health disparity elimination, for example) and laws (such as privacy sanctions) that will create the framework for the NHII. The Working Group has taken a firm position that health statistics system needs mechanisms for sharing and linking information with adequate privacy protections. We think that the interim report is on target when it finds the need for comprehensive federal and state health information privacy legislation. We agree that this is the only way to ensure that the network will have strict, built-in confidentiality protections for personal health information and tools that individuals can use to protect their information and privacy. There is a balance point between the rights of the individual and the public good that derive from ethical research. The Committee should urge an expedited resolution of where this balance point lies because the most significant immediate barrier to NHII implementation is the lack of comprehensive privacy protections for personal health information that support all facets of individual health, healthcare, and public health.

NHII Functions

The interim report identifies a wide spectrum of NHII functions including information capture, information storage, information communication, and information processing. In this section we discuss how the NHII can improve human communication about health issues by improving the tools available for presenting information. Presentation of health information has become affordable with online tools such as e-mail, list-serves, and Web browsers. Internet technology has also made it possible to mass customize health messages. However, designing a roadmap for the NHII requires addressing much more than Internet. Other media and formats need to be included.102 Presentations are made in a wide range of settings.103 There are benefits to each, as well as barriers to effective communication, depending on the setting and the format.104 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.105

Personal Health Domain

The interim report presents a view of the NHII that can have a strong positive impact for each and every individual. Features that the Working Group describes include enhanced access to consumer health information, peer and support services; greater choice of care; tracking of health histories over a lifetime; and increased accountability for quality and costs. Elements of the Personal Health Dimension include personal health records, personal health management tools, and accessible resource information.

Much of the foundation for the personal dimensions of the NHII has been firmly laid over the last ten years through public and private collaboration. The functions of the Personal Health Domain within the NII range from interactive health management to increased accountability for quality and costs. The NHII today offers consumers a vast amount of credible information about diseases and treatments in a library format. The availability and use of consumer health information will improve individuals’ opportunities for learning about healthy lifestyles and wellness. Health risk assessment tools that link to ongoing search tools help consumers focus on issues with which they are particularly concerned. Diary tools help patients track their own health histories. The emerging field of informed, shared decision-making better supports patient-doctor communication. Automated reminders enable patients to better manage their condition and improve the timeliness of medication and treatments106. Peer support activities on the Web are increasingly popular. Most of these functions are far beyond the traditional medical delivery system.

We encourage the Working Group to provide additional documentation about the field of Interactive Health Communication (IHC) in the final report. To develop successful IHC applications within the Personal Health Domain, a complete understanding of three psychosocial concepts is needed: empowerment, self-efficacy, and motivation. Empowerment enables people to have control over their lives and has a direct relationship to health outcomes. In the extreme, powerlessness can be considered a causative factor for disease. People facing life transitions or health problems often need the support of others who care about them and have experienced similar problems. Additionally, online support groups and self-assessment tools can enhance an individual’s sense of personal power and renew their commitment to change. Similarly, a person’s level of self-confidence is predictive of improvements in their functional status. Perceived self-efficacy affects, among other things, smoking cessation relapse, pain management, control of weight, recovery from illness and adherence to preventive health measures.

Tailoring content107 and interfaces to accommodate individual characteristics and preferences is important. One of the important challenges in designing a successful system for delivering health information to all Americans is the wide range of both readiness and aptitudes within the population. Technology now makes it possible to mass customize the manner in which information is presented. This is key to the potential to serve populations that have previously under-benefited from health information. The most significant usability considerations that should receive high priority are literacy level, language fluency, disabilities, cultural acceptance and appeal based on age group.108 The explosion of the aging population requires a serious effort to develop health communication systems for the elderly. We hope to meet the chronic care and disease management needs that will be on us well before the healthcare system has adjusted to the demograpghic shift we are going through.

Provider Domain

A dramatic reduction in medical mistakes and other adverse effects of care is one of the most significant benefits that the Committee expects from the NHII The committee also sees the need for concensus among healthcare professionals to accept the contribution of practice guidelines and other knowledge management tools. The interim report's description of content within the Health Care Provider Dimension of the NHII includes patient records, clinical practice support, and care planning resources

The NHII is just now beginning to adopt the types of standards needed to support the administrative functions of healthcare. By having around-the-clock access to more complete and accurate patient data, providers will be able to make better and more timely decisions. With the greater availability of drug interaction data and care pathways, alerts, and reminders, faster and more accurate diagnosis, treatment with fewer errors is possible. For example, as the NHII develops, different segments of the medical care system will be able to talk to one another faster and better thus increasing diagnostic accuracy and spotting potential errors before they occur.

The NCVHS vision recognizes that the Health Provider Domain must support academic needs. The opportunities for research, education, training and collaborative efforts are many. The NHII supports bio-medical research – an area where continued investment will help produce dramatic new medical treatments.

Community Domain

We strongly agree with the Committee's view that the NHII will also improve community health by taking seemingly isolated events, identifying patterns and trends, and suggesting public health actions to safeguard populations. Content envisioned for the Community Health Dimension includes public health data and health services data as well as policy, program, and resource data

Currently, the NHII is less developed in the areas of public health, human services related to health, and community health. The strategic commitment to the community dimensions of the NHII is a major conceptual milestone that sets US policy firmly on the path to integrating population health strategies into the NHII. The NCVHS inclusion of the community dimension of health emphasizes the need to balance the varied determinants of health in a manner reflective of socio-economic, cultural, environmental, local, and regional factors. This effort deserves a significant and sustained federal investment.

The reason these aspects of population health are ripe for NHII development has to do with the emerging scientific insight into the nature of health and its determinants. Health, as defined by the World Health Organization, is "the state of complete physical, mental and social well being. " From a population perspective, health is brought about by the interaction of many factors: economics, the environment, housing and the educational system to name a few. Health, in this context, must be viewed on the community level and not solely on the delivery of personal medical services. It is imperative that our technical and data systems are designed with this in mind.

It is important to note the impact that different aspects of the NHII have on community health. The collection of data, its storage and analysis will bring improved reporting of information needed to identify emerging health problems of the population. It will also bring better information on how to describe the community and its sub-populations and will help identify the unique needs of these groups, often under-served due to their social or environmental conditions. The extremely rapid communication afforded by the network allows professionals to rapidly inform and educate individuals about these critical health issues.

Barriers to Implementing the National Health Information Infrastructure

Barriers to the widespread adoption of health applications available using NII technology include: healthcare provider resistance, lack of financial incentives to change behavior, lack of access to infrastructure, inability to utilize applications, substantial implementation and maintenance costs, and a lack of sufficient data on the effectiveness of specific applications.

Excelling in knowledge about and treatment of disease entities is very valuable but should not be the predominant, overriding basis for the health system and the information resources that support it. Problems identified include the following:109

  • Lack of adequate capital funding.
  • Fragmented approach.
  • Lack of collaborative effort.
  • Gaps in defined areas of need.
  • Lack of unifying plan of development and implementation.
  • Untimely unsuccessful implementation.
  • Lack of consistent quality and quality control.
  • Lack of uniform data standards.
  • Lack of authoritative mandate.

We believe that the solutions we advocate in the section of this report on "Recommendations for Federal Action" will overcome most of the challenges listed above. With that in mind, we want to emphasize some key points. Violation of privacy and confidentiality needs to be minimized with appropriate federal laws and regulations as well as the application of appropriate technology. Without well-designed evaluative processes, resources may be wasted and needed innovation or modification may be delayed. The government must be an active partner in creating Internet inclusion or the widening technology gap will surely increase existing health disparities.

Capital investment costs can be a serious barrier to implementing many NHII solutions. We concur with the position taken by the NHII Working Group that creating the networks, systems, and applications to support the NHII will have to be accomplished as a public/private partnership. Often, private healthcare providers do not see an adequate economic return from computer-based record systems for primary care. We have the technology, we don’t have the universal access to it necessary to leverage care for quality, cost-effectiveness, and access improvements.

The full potential of the NHII will not be achieved until its benefits can be shared equally by all. People from some racial and ethnic backgrounds and lower socio-economic groups often carry the heaviest health burdens along with the aged and disabled. Technology and online information and services must be available in all homes and communities because they empower people to do as much as possible for themselves. Barriers to access of health information by those who need it are cost, geographic location, literacy level, disability, cultural factors and capacity.

Catalysts for Implementing the National Health Information Infrastructure

To properly develop the NHII the corresponding steps should be taken by the federal government:

  • Adequate capital funding.
  • Integrated approach.
  • Cross-cutting collaborative effort.
  • Thoroughly define and address areas of need (e.g. population data, environmental data, socio-cultural data).
  • Unified administration-wide plan of development and implementation.
  • Timely results.
  • High level performance and quality control.
  • Uniform data standards.
  • Strong, authoritative, high-level executive mandate.

We strongly agree with the nine steps identified by the Committee. Factors encouraging the greater adoption of health applications using the NII include increasing telecommunication and computing capacity, computer literacy and access, and consumer demand for health information. Also affecting the adoption of IHC are the emphasis on prevention and the need to reduce cost of healthcare services. Solutions to major challenges in the health communication field focus on providing information and support to people who can benefit greatly but lack the tools to get all the information and support they need.

Effective work has begun in the following strategic areas with constructive leadership and funding from both governmental and corporate sources.

  • Support for health technology access in the home and public places.
  • Developing applications for the diversity of users.
  • Funding research on access.
  • Enhancing health and technology literacy.
  • Training health information intermediaries.
  • Planning for universal access to health information.

The point-of-access to Internet technology is a health policy issue and a balance of public and private access locations is needed. The ideal point of access for many of the personal health functions of the Internet is the home because this allows the user to access the application at any time of day in privacy and comfort. However, some applications can function effectively in more public settings such as schools, libraries, and work sites.110

Knowledge-based firms in this new economy locate where educated and skilled workers live, where opportunities for lifelong learning exist, and where the quality of life is valued. In both health and technology sectors leading innovations often cluster geographically. In both sectors, knowledge generation is particularly important. Knowledge spillovers between firms and between firms and academic institutions are particularly significant in high technology and health sectors. Because of this pattern, we recommend creating regional centers of excellence that will offer technical assistance and technology transfer support for NHII application development. As technology evolves, the capacity for cost-effective health communication is beginning to become available. First-generation (1g) mobile communication was analog cellular. Second-generation (2g) mobile communication was digital cellular. Third-generation technology (3g) combines broadband wireless communication and high performance Internet and is a logical extension of the NGI conceptual framework. Indeed, it is the essential bi-sector technology area that will impact the NHII. The new health economy will likely be characterized by the emergence of health information, communication, monitoring, reminders, interactive dialogue screens, and multi-media learning tools all using third-generation (3g) technology.

President Clinton issued an executive order in October 2000 to speed the process of preparing for a new auction of airwaves that will be allocated for 3g uses. The NCEA white paper supporting this move cited the key role 3g technology will play in sustaining the expansion of the new economy. We see 3g technology as a critical lever in the shift from the old medical-finance model of the health economy to a health economy based on communication and information. 3g technology applications need to be developed that integrate public health, prevention, health promotion, and care managing into the NHII.

We believe that unless standards are global and in the public domain, many parts of the globe will not be served or capable of affording access. If standards are public domain then everyone will be able to "ride on the highway". To achieve this, serious consideration should be given to public purchasing at fair market value of systems of that provide fundamental functionality and usability to the NHII.

One of the issues in the proposed auction of public bandwidth is the continuity of service offered by incumbents who already control portions of the bandwidth. The law requires that if an incumbent is moved, provisions must be made to continue their services or compensate them appropriately. The Executive Order made clear that the DoD will not have to surrender any licenses essential to public safety. Essential services in the health domain clearly fall within this protection.

A solution should be found to the long-term allocation of bandwidth for the NGI services essential for public health and safety. One option is for the emergency preparedness component of the USPHS to reside as part of the bandwidth dedicated to the DoD through a joint powers agreement . Consideration should also be given to the infrastructure of public tele-health and distance health learning. Alternatives such as assigning a spectrum to the USPHS may make sense in the context of increased public investment in health infrastructure and the key role of 3g technology in fulfilling essential public health services. We believe that if this issue is fully debated there will be compelling bi-partisan support for setting aside the USPHS bandwidth for the NHII components that are public domain.

Research productivity is increasing dramatically and major factors are the speed, capacity, and usability of information technology. High-performance computing across high-speed research networks has dramatically accelerated the unlocking the genetic code. A better understanding of the cause and progression of disease has resulted. The synergy between bio-medical and information sciences has hastened the arrival of novel and often more affordable medicines, diagnostic procedures and vaccines. This is a particularly important issue in developing countries that lack these important resources. Our government has joined with the efforts of private organizations such as the Global Alliance for Vaccines and Immunizations, launched by the Bill and Melissa Gates Foundation, to leverage this economic advantage in an effort to alleviate the problems these countries face.

Implementing the 21st Century Vision of Health Statistics

In the process of setting direction and priorities for the complex fields of health statistics and health information infrastructure it is important to keep the primary issues in view at all times. This begins with a consensus definition of health statistics – agreeing on the uses of health statistics, understanding who uses health information and what makes the information useful to them. The next step is to clearly define the principles by which systems of health statistics and information will be developed. After this, the complex nature of information infrastructure needs to be defined.

Although it may seem very basic, we think it is important that the Working Group on Health Statistics defines their subject in general terms.

"Health statistics are health data that can be generalized to a known population of individuals, events, organizations, or institutions." (p. 3 Shaping a Vision for 21st Century Health Statistics: Interim Report, June 2000)

Health data must be collected and organized to form useful groupings constituting information that is relevant to the health issues at hand. The information then needs to be displayed and communicated in ways that are understandable and useful to the decision makers to whom the information is presented. From this manner of defining health statistics, issues arise about the process of collecting original data, the process of organizing the data, and process of choosing issues that need to be elucidated with health statistics before a sound decision can be made.

Identifying patterns and trends is the most basic use of statistics. The capacity to determine the beginnings, origin, location, and magnitude of communicable diseases through analysis of appropriate data is well developed in the United States. In times of disaster or related emergencies this information assumes a critical importance in decision making. However, the capacity to identify the multiple determinants of chronic conditions has not been adequately developed.

Additional important uses of health statistics are to design and implement specific healthcare and population health interventions, programs, and policies. Since statistics are collected along a continuum, they give the professional a method to monitor and evaluate program performance. This capability allows them to modify, expand, or discontinue programs based on their relevance to community need. The success of the public health enterprise hinges on the role of health information in assessing local, state, national, or international health; mobilizing to improve it; and evaluating the success of those efforts.

When health information is communicated effectively it helps shape personal, professional, and public decisions. The users of health information include citizens, policy makers, public health workers, healthcare providers, researchers, employers, the media and others. The potential beneficiaries include families, community leaders, healthcare professionals and institutions, businesses of all kinds and sizes, educators, local health departments, the media, social service providers, advocacy groups, foundations, and every level and branch of government.

Principles for the 21st Century Vision of Health Statistics

In Shaping a Vision for 21st Century Health Statistics: Interim Report, June 2000, ten principles are identified that are essential to developing a successful system of health statistics for the 21st Century. We devote most of our comments to the first two principles, but we agree that they are all important. The subject areas are:

  • Privacy, confidentiality, security, and fair information practices
  • Conceptual framework.
  • Flexibility to identify and address emergent issues and health needs of the population.
  • Usefulness at different levels of aggregation.
  • Compatible standards serving multiple purposes.
  • Unitary data collection for multiple purposes.
  • Maximum access and ease of use.
  • Policy relevance.
  • Broad collaboration.
  • Adequate, well-managed resources.

Principle #1: Privacy, Confidentiality, Security and Fair Information Practices

We strongly agree with the Committee's statement of principles "Protecting the privacy and confidentiality of personal health data is of highest importance. This precondition applies to all other principles." (Shaping a Vision for 21st Century Health Statistics, p. 17)

The issues that relate to privacy in the use of health information are controversial aspects of health statistics. This specific policy problem is an instance of a broader class of public health regulatory issues. Public health laws and regulations along with their enforcement have a compelling record of accomplishment for delivering public benefit in the form of a healthier, safer, more productive population. Nevertheless, the relief of untold human suffering through the practice of public health has often come with a trade-off. Private rights, personal burdens, the economic interests of individuals and businesses all must be weighed against the common good and a balance between them must be established.

Definitions Related to Privacy

As a starting point, we use clarifying definitions as presented by Larry Gostin.

Privacy: An individual's claim to limit access by others to some aspect of their personal life.

Health informational privacy: An individual's claim to control the circumstances in which personal health information is collected used, stored, and transmitted.

Confidentiality: A form of health informational privacy that focuses on maintaining trust between two individuals engaged in an intimate relationship, characteristically a physician-patient relationship.

Security: The technical, organizational, and administrative safety practices designed to protect a data system against unwarranted disclosure, modification, or destruction, and to safeguard the system itself. A secure data system will protect health records from unauthorized use. Invasions of privacy will occur when, due to inadequate security, personal records are accessed without permission.

The Conflict Between Consumer and Research Needs

The parties to the health privacy debate are consumer advocates, business, justice, law enforcement, and health researchers. However, the most intractable conflict lies between patients on one side and health plan quality managers and health service researchers on the other. It would seem that anonymous data where all identifiers are stripped and there is no reasonable means to associate the information with a specific person would be the acceptable answer. However, further analysis shows that this simplistic approach is not feasible for scientific and quality assurance purposes.

Online health seekers fear privacy violations. These consumers are very anxious to have their privacy protected. They are afraid of Websites selling or giving away information about them, about insurance companies learning about their preconditions and making coverage decisions based on that, and about their employers learning what they have done. Among the most sensitive to privacy violations are African-Americans, parents, and Internet newcomers (those who first came online less than six months ago). Online health seekers want protection and the right to punish companies that violate their privacy policies.

The most serious concern arises when health authorities or business entities use personally identifiable or linkable data. Linkable data occurs when de-identified data can be traced back to an individual. If an authorized party discloses or allows access to privileged health information, the subject of the information may be harmed. The consequences of such disclosures may have a significantly negative impact on the individual. For example, economic harms such as loss of job, insurance or housing may take place. Social isolation, embarrassment, or loss of self-esteem could also be a result. Finally, there is a great need for security policies, technical systems, and organizational procedures to assure sound management practice with appropriately severe penalties when such practices are not followed in a consistent fashion.

Data "de-identification" and suppression of linkable data also satisfy the interests of the consumer advocates. Concurrently, this creates concern on the part of health researchers. Their position is that anonymous information prevents necessary quality surveillance and research needed for accurate and complete records. Also, it makes conducting follow-up procedures and avoiding duplication difficult. An ideal compromise would seem to support the idea that health information should, to the extent possible, be used for the public good while furnishing reasonable privacy protection.

Integral to this debate are the final HIPAA regulations regarding the privacy of health information which will give the consumer greater control over their health information. The HIPAA health-information privacy regulations will probably not cover the majority of the nation’s more than 17,000 health-related Websites. Analysis by the Health Privacy Project (Institute of Health Care Research and Privacy, Georgetown University) suggests that many Websites do not clearly fall into the three categories of organizations covered by the regulations – healthcare providers, insurance companies, and health data clearinghouses (the organizations that process and transmit insurance-claim data).

Adding another oversight issue is the Financial Services Modernization Act (FSMA), which will apply to financial institutions including health insurers. Its current reading in relation to privacy gives the consumer the "right" to opt out of disclosures made to non-affiliated third parties. However, opting out is not automatic. The burden is on the consumer to notify the business. If the consumer does not initiate this action then the information business is free to sell what they know about their customer to a non-affiliated third party. If the third party is an affiliated company then the consumer has no protection. Consumer advocates object strenuously to this aspect of the FSMA.

The implementation of HIPAA regulations and the resolution of conflicts between HIPAA and FSMA will set the stage for major changes in the handling of health information throughout the country. The confidentiality of health information about individuals must be protected. Americans are adamant that their medical histories remain confidential between themselves and their physician. In today’s complex world, this presents a set of tough challenges.

Model State Public Health Privacy Law

National, state and local public health functions require state as well as federal health privacy laws. The purpose of the Model State Public Health Privacy Project was to develop a model state law addressing privacy and confidentiality issues arising from the collection, use, and dissemination of health information by public health departments at the state and local levels. If implemented widely by the states, this model privacy law will facilitate national HIV reporting. It would protect the confidential, identifiable information held by public health departments against unauthorized publication. It would not, however, significantly limit the ability of departments to use such information for legitimate public health objectives at present and in the future.

The Logistics of Maintaining Privacy

Because patients are treated at many different facilities over time, all of the following must occur if their record is going to be available at the point of care in a timely manner and the confidentiality of their medical record is to be maintained. All of the data functions listed below are needed for the sole purpose of providing personal medical services in a competent way.

Capturing data: Each input to the record must be captured in digital form.

Storing data: The records must be stored electronically.

Locating data: Components of the record must locatable across multiple networks.

Transmitting data: The documents must be transmitted electronically.

Coding and interpreting data: The record must be interpreted correctly thus requiring standardization. Plans, providers, employers, and patients need to be identifiable. Health conditions, procedures, and transactions need to be coded in a standardized manner.

The secondary uses of health data are the most problematic aspect of the patient confidentiality debate. While there is relative consensus on most of the standards, the cornerstone of privacy and confidentiality centers on the controversial unique identifier for individuals. The Consumer Bill of Rights published by the President Clinton's Quality Commission emphasized the importance of confidentiality of identifiable health information. The question of whether the unique identifier is compatible with this right is still undecided. Nothing short of improved population health and the quality of our personal medical service system are at stake.

Only properly authorized individuals should ever have access to information that is confidential. This can be effected by strictly specifying who has access or by assigning access privileges to classes of users based on their role.

Additional data functions are needed to conduct health services evaluation and research, public health surveillance, epidemiology, and other population health practices. These secondary uses of health data require that the primary data be aggregated in various ways. In order to do this without jeopardizing patient confidentiality, the data that is originally personally identifiable must be stripped of its association to the individual patient through a process called de-identification.

Equal to the importance of secure data is the use of person-specific information for public health and medical research. This need is real and will remain so for the foreseeable future. Further, access to such data is at risk unless the fulcrum balancing personal privacy and access to person-specific data is set correctly. The policy challenge is a major one since any breach of privacy can get major airing in the media while small gains coming from research appear to simply arrive out of the ether. The need for access to person-specific data for clinical and health services research cannot be overestimated.

Principle #2: Conceptual Framework

We strongly agree with the Committee that an overarching conceptual framework is needed to help organize the different elements of the health statistics system. We also agree with Black, et al. that "a bold new vision is required to seize the opportunities of the 21st Century and provide direction to these efforts. While enormous progress has been made in health statistics systems during the 20th Century, our current approaches fall short of providing a framework for moving into the future." (From Health Statistics to Health Information Systems, p. 1)

We recognize that the "outcomes framework" for health statistics and the "population health framework" for health statistics are viewed in the field as competing approaches but we believe this dichotomy is misguided. For example, Black, et al observe that "whereas the outcomes movement focuses on patients who receive specific interventions for identified diseases from the healthcare system, the population health framework encourages conceptualization of populations defined by characteristics other than by their interaction with the medical care system." (From Health Statistics to Health Information Systems, p. 3) It is our view that the goal should be for the US system of health Statistics to be comprehensive, and integrated.

Black et al incorrectly assume that the US lacks a population health agenda simply because AHCPR operates within an outcomes paradigm instead of a population paradigm. However, we find that the OPHS and the CDC both clearly articulate a population health agenda. In our view, the Healthy People 2010 framework does an excellent job at creating a holistic framework that balances the medical and non-medical determinants of health. That does not mean however, that the nation can simply migrate from its legacy of fragmented, medically focused data silos to an integrated and comprehensive system of health statistics.

Healthy People 2010 espouses a systematic approach to health improvement. This systematic approach to health has three broad implications for health statistics. Using the Healthy People 2010 approach requires:

  • Setting goals based on quality of life and population-based definitions of health.
  • Conceptualizing health objectives based on the determinants of health.
  • Tracking health status using complex sets of indicators rather than simple morbidity and mortality measures.

A Statistical System Based on Health Determinants

As we have already stated, determinants of health encompass individual biology and behavior, physical and social environments (including education, occupation and socio-economic status), policies and interventions, and access to quality healthcare. Objectives measure actual progress within a specified amount of time. Determinant-based health objectives are those objectives that reflect the critical influences that determine the health of individuals and communities. Because individual behaviors and environmental factors are responsible for about 70% of premature deaths in the United States, it follows that health statistics should track these domains in sufficient detail to support preventive policies and interventions.

An evaluation of health determinants is an important part of developing any strategy to improve health. Tracking determinants across the full array of sub-populations requires a "new health statistics." We believe that understanding these determinants and how they relate to one another is the most important key to increasing the quality and years of life and of eliminating the nation’s health disparities. Health statistics are the foundation of the analytic process by which this new understanding will be achieved.

The 467 Healthy People 2010 objectives are being tracked by 190 data sources. A major data source is defined as a data system responsible for tracking five or more Healthy People 2010 objectives. There are 23 data systems that meet these criteria. More than three-fifths (286) of the objectives are tracked with data from these sources. DATA2010 is an interactive database system developed by staff of the division of Health Promotion Statistics of the National Center for Health Statistics, and contains the most recent monitoring data for tracking Healthy People 2010. Data are included for all the objectives and subgroups identified in the Healthy People 2010: Objectives for Improving Health. DATA2010 began with only national data. However, state data for selected objectives will be provided when available.

The measure of success in any health improvement effort is the positive change in health status of the target population. The new health statistics calls for a complex assessment of sub-population health status. So far, our ability to benchmark the high priority demographic breakouts by age, gender, race and ethnicity, education and income, occupation, disability, geographic location, and sexual orientation is more advanced in some areas than others. In the following section on health demography, we give an overview of the resources available for each of these important population categories. Data integration within age categories has been improved through a mechanism of interagency forums. Women's health has received a lot of long-over due attention in recent years. The ability to track many minority and ethnic sub-groups, however, is inadequate.

Health demography is not just about data elements. It is more than sub-population breakout detail for each national health objective. The greater purpose of the new health statistics is developing insight into the character of our population. The new health statistics will help us better understand the health impacts of the trends such as 1) a rapidly aging of the population, 2) changing household composition with more single-parent families, 3) increasing racial and ethnic complexity in a society that is still gradually integrating, and 4) more people with disabilities that are active in the workplace, schools, and community at large.

Strategic Framework

We strongly agree with the position described in the Workgroup on Health Statistics' interim report: "Future health statistics need an overarching conceptual framework that encompasses all the relevant aspects of the population’s health and reflects their interactions," Shaping a Vision for 21st Century Health Statistics (p. 18). We believe that a shift to a "determinants of health" model for health statistics is the first step to guide what data is collected and the way it is organized into useful information. We agree with the interim report that a new framework will make it possible to expand beyond the medical, infectious disease, and vital statistics models that are dominated by utilization and financing data.

The fundamental design concept we recommend is to take a systems view of health dynamics. In this view, all the factors that contribute to the health of people and communities, from the biological to the personal and the collective, are seen as intertwined. By better understanding these inter-dynamics health policies can be more rational and more effective while building on the successes that have already been achieved.

The component systems within the overall set of health determinants are 1) biological pre-dispositions and responses, 2) patterns of behavioral influence, 3) precursors of health status within social environments,111 4) physical and chemical mechanisms of environment health effects, 5) impact of both public and private policies and interventions, 6) and consequences of access to quality healthcare, and 7) cultural patterning of health behavior and health environments.

In this section we examine more closely the implications of a systems view of health for health statistics. We look both within each system of determinants (e.g. biological, behavioral, etc.) and at the types of interactions between systems that need careful study.

Biology

We agree with the Committee that tracking biological determinants of health are critical to the success of the 21stCentury Health Statistics, including Genome research and prevention.

Biology refers to the individual’s genetic makeup (those factors with which he or she is born), family history (which may suggest risk for disease), and the physical and mental health problems acquired during life. Key interactions that need to be modeled include:

  • Demographic factors (such as aging),
  • Behavioral Factors (such as diet, physical activity, smoking, alcohol, illicit drug abuse, injury, and violence)
  • Environmental Factors (such as an infectious or toxic agents, and stress)

All of these determinants can interact with biology and result in illness or disability thus producing a "new" biology for the individual.

Personal Lifestyle and Behaviors

Behaviors are individual responses to internal stimuli and external conditions. Behaviors can have a reciprocal relationship to biology; in other words, each can react to the other. Personal choices and the social and physical environments surrounding individuals can shape behaviors. The social and physical environments include all factors that affect the life of individuals, positively or negatively, many of which may not be under their immediate or direct control.

Personal life style factors can be persistent population health barriers. Smoking, the excessive use of alcohol, and poor nutrition, directly or indirectly are causal factors in the vast majority of deaths and disabilities in our country. Smoking alone may contribute to a staggering 400,000 deaths!

The healthfinder® site provides a gateway to authoritative and useful information on the key lifestyle / behavioral health issues such as tobacco,112 physical activity,113 nutrition,114sexual behavior,115 and alcohol/substance abuse.116 An example of an important resource in this area is the Office on Smoking and Health (OSH), established in 1978, a division of the Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion.117

 

Social Environment

The Committee has taken an important step by emphasizing cultural and socio-economic trends in formulating a health statistics framework for the 21st Century. We concur that the most significant cultural factor is the availability of social supports. We also applaud the Committee for emphasizing important socio-economic trends instead of just socio-economic "snap-shots." The growing gaps between the resources available to the wealthy and to the non-wealthy, differentials in economic and social status, self-employment and job security, poverty and the working poor along with changes in education, language, immigrant status are all critical trends to follow.

Social environment includes interactions with family, friends, co-workers, and others in the community. It also encompasses social institutions, such as law enforcement, the workplace, places of worship, and schools. Housing, public transportation, and the presence or absence of violence in the community are some of the components of social environment. The social environment has a profound effect on individual health as well as on the health of the larger community. At the same time, individuals and their behaviors contribute to the quality of the social environment.

The workplace is a physical/social environment. Work site improvements that reduce death, disability and illness usually have employee support if accompanied by educational efforts to define their contribution. Similarly, employers are motivated to maintain a safe work site because these efforts reduce absenteeism, turnover and healthcare cost. The goal of work site health promotion and education is to create a culture that supports both individual and organizational needs.

An example of a general Web resource in the field of social health is the WWW Virtual Library of Public Health. This is a Website contains links to meaningful resources through a portal organized around 85 topics relating to social health that are constantly reviewed and updated. Currently these topics provide 1438 links which themselves link to thousands of other links.118

Other Web resources in the social health field exemplify government leadership,119 trade-specific,120 participation by industry,121academic resource development,122 and Websites devoted to highly focused subjects.123

Physical Environment

We agree with the Committee that understanding and the ability to act on environmental threats to health is a very important requirement for the nation’s system of 21st Century health statistics. The physical environment can harm individual and community health, especially when individuals and communities are exposed to toxic substances, irritants, infectious agents, and physical hazards in homes, schools, and work sites. The physical environment also can promote good health, for example, by providing clean and safe places for people to work, exercise, and play.

There are many environmental factors influencing population health on the community level. Unfortunately, many of these components reside in the domain of agencies that do not acknowledge this health relationship. For example, the Department of Justice's juvenile criminal justice system directly impacts the health of a young person who gets into the system. The Department of Transportation’s auto accident rates reflect factors that are detrimental to the health of the community in which they occur. Statistics from the independent Environmental Protection Agency have a more obvious connection with the health related environment of the community by locating, measuring, and monitoring toxic assaults on the well being of the community members. The White House involvement with environmental health has gained focus through the Council of Environmental Quality. One notable program is their effort to make low-income homes lead safe, particularly in homes with children under six years of age. This is under the auspices of and funded by Housing and Urban Development agency.

The function of reporting environmental health statistics represents a juncture between the health statistics system and the NHII. Each branch of health statistics has its own formats for reporting statistics out to data users and the public. Environmental Public Health Surveillance (EPHS) has standard124 and specialized formats125 as well as dynamic, interactive query126 capabilities. A wide variety of existing resources should be incorporated as a new environmental health tracking system is developed to meet 21st Century needs. Examples include Websites devoted to special topics such as indoor air quality,127 public/private partnership sites promoting corporate self-improvement,128 sites with community rankings to raise awareness of local environmental health risks,128 and sites devoted to environmental impacts on the health of vulnerable populations such as children.129

Policies and Interventions

Policies and interventions can have a powerful and positive effect on the health of individuals and the community. Examples include 1) health promotion campaigns to prevent smoking, 2) policies mandating child restraints and safety belt use in automobiles, 3) disease prevention services such as immunization, and 4) clinical services such as enhanced mental healthcare. Policies and interventions that promote individual and community health may be implemented by a variety of agencies such as transportation, education, energy, housing, labor, justice, and other venues, or through places of worship, community-based organizations, civic groups, and businesses.

An important area to work on integration between the national health statistics system and the NHII is the dissemination of information about government programs to the public. Because the programs of so many federal departments have health ramifications it is useful to start with a general resource like the Catalog of Federal Domestic Assistance (CFDA). The CFDA Website offers a government-wide compendium of federal programs, projects, services, and activities that provide assistance or benefits to the American public. It contains financial and non-financial assistance programs administered by departments and establishments of the federal government. The 2000 Basic Catalog contains 1,425 assistance programs administered by 57 federal agencies.

Access to Quality Health Care

We believe that the Committee is correct to include both health service factors and healthcare seeking by consumers in the types of information needed in the nation’s health statistics system. We encourage the Committee to maintain a proactive stance with regard to the following health service factors:

  • Using the techniques of e-commerce to assure access to devices or other means of assisting people with functional impairment.
  • Integrating the techniques of population health science by strengthening the capacity for evidence-based medicine.
  • Supporting the evaluation of the cost-benefit and appropriateness of expensive, high-tech solutions to medical problems.
  • Enabling the provision of care outside traditional inpatient settings.
  • Recognizing the pressures away from specialty care and toward primary care by establishing better linkages between the two.

The health of individuals and communities depends greatly on access to quality healthcare. Expanding access to quality healthcare is important to eliminate health disparities and to increase the quality and years of healthy life for all people living in the United States. When consumers seek access to care, an evidence-based approach should be taken to producing information relevant to their decision-making process. Information derived from health statistics needs to be translated into a form that is useful to patients in the following situations:

  • Choosing alternative forms of treatment
  • Communicating with their professional providers
  • Evaluating when and when not to rely on self-care
  • Carrying out informal and family care-giving

A good example of the effective use of statistics to assure appropriate clinical preventive services is the National Immunization Program (NIP). This program properly implements standards, safeguards privacy, integrates databases, fosters quality customer service, and applies population-based interventions at the community level.130 The NIP also provides an Immunization Registry Clearinghouse to collect, synthesize, and distribute information about immunization registries through a registry Web site.131

Principle #3: Identifying and Addressing Emergent Issues

Designing an adaptable health statistics system that can be easily extended to new areas over time is very important. We agree with the Working Group that the health statistics system must be flexible enough to identify and respond to new information needs. Knowledge gaps exist in two broad areas:

  • Mechanisms for collecting longitudinal data to help us understand emerging trends and threats to the population’s health,
  • Better ways to characterize the complex interactions among the factors that affect health.

The first step is to address any data types and specific data elements currently missing from the vast data resources maintained by the DHHS. 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 integration of the data that relates to those entities. One key is to model these interconnections at a sufficiently high level in the government to include the many pertinent executive branch councils, commissions, and departments.

Patterns in health status are monitored so that emergent conditions can be responded to and disparities can be investigated, explained and corrected. Other health status trends that require increased tracking include chronic illness, co-morbidity, mental and behavioral health, and changes in functional status that occur with age. Understanding and monitoring behaviors, environmental factors, and community health systems may prove more useful to monitoring the nation’s true health and in driving health improvement activities than are the death rates that reflect the cumulative impact of these factors. This more complex approach has served as the basis for developing the Leading Health Indicators used in Healthy People 2010.

Measuring health status has evolved from vital statistics (birth and death rates and life expectancy) to include medical indicators (morbidity from specific diseases and use of ambulatory care and inpatient care). The relative absence of disease and presence of longevity developed as the main ways to infer the relative healthiness of a population. As the assessment tools improved it became possible to index the severity of health conditions. Indexing scales were developed using relative morbidity and resource consumption. Originally inpatient care was the only treatment variable that was carefully tracked. Now data about outpatient services, long-term institutional care, and licensed community-based care add more balance to the picture of health status that is derived from treatment. An important way of tracking the health needs of a chronically ill population is to look at risk levels not just in terms of signs and symptoms but also in relation to knowledge of required self-care, motivation, and regimen compliance. As aging becomes a dominant demographic factor, the way we think about measuring health status will become increasingly involved in assessing quality of life.

Leading Health Indicators are used to measure the health of the nation. Each of the ten Leading Health Indicators has one or more objectives from Healthy People 2010 associated with it.132 As a group, the Leading Health Indicators reflect the major health concerns in the United States at the beginning of the 21st Century.

The Leading Health Indicators reflect the determinants of health. Body weight expresses biological inheritance and physiological response to diet and exercise. Physical activity, tobacco use, substance abuse, and responsible sexual practices are all behavioral factors. Injury and violence indicate the level of risk in the social environment. Environmental quality refers to the potential of the physical environment to induce unwanted health effects. Immunization and access to healthcare are sensitive clinical factors that influence population health. Mental health reflects on the well being and quality of life of the whole person.

We also believe that the Working Group is correct in its emphasis on health decision making. Health statistics must be collected, organized, and made available in ways that inform and facilitate decision-making on health. Moreover, information must be available at a sufficiently detailed level (e.g. geographic area, and racial and ethnic sub-population) to be relevant to actual decisions.

Principle #4: Usefulness at different levels of aggregation.

Health statistics data must be provided back to communities, community groups, local governments, policy makers, healthcare providers, and others in ways that maximize data access and ease of use.

A large body of literature exists on the subject of data standards. Again, we support the findings of the working group in this area and agree that data standards are essential and should have maximum usefulness to public health, healthcare delivery, health statistics, and research.

A significant step to realizing these community level requirements of the 21st Century Health Statistics will be taken by implementing the National Spatial Data Infrastructure (NSDI) as specified by the the Federal Geographic Data Committee (FGDC).133

GIS applications of many different disciplines have a recurring need for a few themes of data. The framework is a collaborative community based effort in which these commonly needed data themes are developed, maintained, and integrated by public and private organizations within a geographic area. Local, regional, state, and federal government organizations and private companies see the framework as a way to share resources, improve communications, and increase efficiency.

In this section we briefly summarize some of the data resources that need to be organized within the community level of public health practice and healthcare delivery. There needs to exist for each community a comprehensive collection of local data sets stored in that community's own "electronic data warehouse." Some of the different sources that states can use to populate such a repository with data are retrospective linkages between related data sets, hospital discharge data files, registries (e.g. cancer and immunization), and state HCFA-related data files. State and federal program data need to be supplied to the community repository (e.g. Maternal and Child Health program data, facts about the WIC program). The community can add data sets derived locally such as public safety statistics from their police and fire jurisdictions. Community level data acquisition must be a sustainable enterprise that begins with obtaining baseline measures, moves on to setting targets, and continues in the practice of measuring ongoing progress.

A good example of a collaborative effort is the development of the Community Health Status Indicators Project (CHSI ). This county-specific report on community health was made possible through the efforts of the Association of State and Territorial Health Officials ( ASTHO ), NACCHO , and the Public Health Foundation with funding from the Health Resources and Services Administration of the Department of Health and Human Service. The goal is to provide and present important health related data in a way that is useful to the communities.

Principles #5 & 6: Multi-purpose Data

The Working Group on Health Statistics makes a strong point that data should be collected once, then used for multiple purposes in ways that promote sharing, efficiency, and protect privacy and confidentiality. One of the most effective organizational approaches to getting and keeping the complex, sustained effort needed to achieve single-entry/multi-use operations is the use of interagency data forums. Interagency forums need to be part of an overall administrative template that allows system-wide planning and coordination so that resources can be better managed.

Some states have almost no expertise or enterprise devoted to the integration of health data. Other states make a vigorous effort to obtain the most rational and sophisticated health data possible. The lack of federal standards for state-level data integration will remain a barrier to high quality health statistics until the problem is resolved.

Data integration can be achieved through several approaches. Infrastructure and surveillance systems need to be designed for integration. Sometimes that means developing entirely new means of data capture. In other cases it means taking existing data sets and linking them. Inter-departmental collaboration is a critical factor in executing the crosscutting functions that are increasingly important in public health. For this reason, we recommend a population health impact officer in every designated population health key agency (e.g. transportation, EPA, etc.). We elaborate on this idea in a section on leadership later in this paper.

Inter-governmental systems linking federal, state, and local governments with communities must all work together with one end in mind; better serving citizen needs. For these channels to work properly authority, standards and technical assistance need to pass down, comparable data needs to pass up, and replication models needs propagate horizontally.

Principle #7: Maximum Access and Ease of Use.

Because of their varied backgrounds and work settings, professionals in health policy and public health draw information from many settings including an array of books and journals, legal and legislative documents, and epidemiological reports as well as reports, statements, articles and newsletters from numerous governmental and non-governmental sources. Developing criteria to assess the quality of this information requires attention to a variety of factors, including the accuracy and reliability of raw data, the appropriateness of methodology, and sources of extrinsic bias.

Principle #8: Policy Relevance.

To answer the questions "What health information will have policy relevance in the 21st Century?," "Is it essential to examine how health is defined in the health policy field?," and "What motivates the gathering of health information?" we turn to the World Health Organization (WHO) definition of health and the goals defined for Healthy People 2010.

In 1948, the WHO defined health as the state of complete physical, mental and social well being. It is interesting to note that none of the major public health organizations uses a singular definition of health. Each organization uses a definition relative to the project with which it is involved!

It has been proposed that the prologue of the WHO be modified to define health as "the dynamic state of complete physical, mental, spiritual and social well being." This definition has not, as yet, been accepted by the WHO. Its apparent inclusivity allowing for a broad application covers many situations, and is contrasted with the multifaceted variety of definitions that represent the aims and interests of specific communities and organizations. While this has prevented the acceptance of a universal definition of health, it has allowed communities to custom tailor a definition to suit its needs.

The first goal of Healthy People 2010 is to increase the quality and years of healthy life. This is currently measured using global self-assessments, measures of healthy days, and measures of years of healthy life

Healthy People 2010 seeks to increase life expectancy and quality of life over the next ten years by helping individuals gain the knowledge, motivation, and opportunities they need to make informed decisions about their health. This cannot be accomplished without a conceptual model of health-related quality of life that leads to operationally defined objectives and measurable indicators.

We recommend to the Committee that they look to a community-based model that has arguably become an industry standard in long-term care for managing the institutional and non-institutional components of the continuum of care. The "Quality of Life Model"134 first presented in Long Term Care Administration: the Management of Institutional and Non-Institutional Components of the Continuum of Care needs to be refined and adopted as a national standard with the ability to be aggregated from the individual community level to the county, state, and national levels.

The second goal of Healthy People 2010 is to eliminate health disparities among segments of the population. This will require that we gather health and quality of life information about differences that occur by gender, race or ethnicity, education or income, disability, geographic location, or sexual orientation.

Principle #9: Collaboration

We agree with the Working Group reports that implementing a broad vision for a 21st Century Health Statistics system will only be possible through collaboration. Health delivery can be improved by establishing critical connections between people with different perspectives who work together to identify new and better ways to address health issues. By linking related skills and resources of different entities, partnerships have the ability to plan and implement a variety of actions beyond the capabilities of a single organization.

Many factors come into play which determine the success or failure of a health partnership.135 Those interested in participating in these types of associations often make a decision based on the relative benefits and drawback to such a relationship. If, at the "bottom line", the collaboration improves the goals of the partners organization then there is a match. Sometime relative intangibles suit these needs such as heightened public recognition, additional funding, or access to the political process through new relationships.

Drawbacks may be the diversion of time and resources from other priorities, loss of competitive advantage, cost, and reduced influence in the partnership decisions and activities. The most important characteristic of a successful collaboration is leadership that can span ordinary organizational boundaries, bridge diverse cultures, and share ideas, resources, and power.

Implementing the 21st Century vision for health statsitics will require integrating the efforts at every level of government – federal, state and local. Intergovernmental roles and responsibilities must be clearly defined. Inter-Departmental and Cross-Sectoral partnerships are another pivotal aspect of developing the 21st Century vision for health statistics. Data is needed about all of the wide range of factors that determine health. Related Sectors include education, housing, justice, transportation, environmental protection, health, alternative health, recreation, labor, and nutrition.

Finally, public and private sector roles and responsibilities need to be differentiated. Participation of leaders, citizens and stakeholders is fundamental to the success of health statistics initiatives.136 Developing collaborative and partnering efforts are necessary because of the difficulties faced by a single organization in today's complex society to achieve the health goals of the community. The partnering may be between a variety of entities: private individuals, non-profit organizations, business, and government.

Principle #10: Adequate, Well Managed Resources

Financing of the federal health statistics enterprise is an issue that is distinct from financing infrastructure improvements. Many health data resources are currently funded out of the Secretary of DHHS's discretionary evaluation budget which is 1% of the operating division program spending. In our view, federal health statistics resources should be consolidated and financed using a direct appropriation, not 1% funds.

It has become more necessary to assure that tax dollars are spent in an efficient manner. The most commonly used process is to evaluate expenditures based on the return the government would get from the "investment" of budgeted resources. The "return" is in the form of reduced costs, increased savings, or surplus revenues. This business model is used to justify budgetary allowances and expenditures.

A revitalized health statistics with its emphasis on an expanded definition of population health does not allow for a collective ROI but does support the analysis of specific situations. While it is axiomatic in public health that a dollar spent today will save a multiple of that amount of cost in the future, it is quite difficult to give an exact amount or time period of the savings.

Few would dispute the economic value of the early 20th Century battle for clean water, better sanitation, or the successful fight against TB, polio and diphtheria. At that time, it was not easy justifying the expenditure of government dollars on these farsighted but unproven "gambles". The benefit of these investments is made clear by the contrast between the health status of developed countries and those that lack these basic remedies.

The federal health statistics enterprise has a health enabling function that indirectly supports most direct health services to work more successfully. Three primary uses for the broad-based statistics that are produced are:

  • Tracking changes in health and healthcare.
  • Planning, targeting, and assessing the effectiveness of public programs.
  • Identifying health problems, risk factors, and disease patterns.

A good example of a positive return on investment is described by the recent report from the PEW Foundation. In this paper, the national cost of four out of five deaths and 100,000,000 people in our country who suffer from chronic illness comes to $325 billion in annual healthcare costs and lost productivity. The planning, implementation, and maintenance of a critically needed environmental health-tracking network would cost about $275 million. If this investment reduces the national cost by even a nominal amount, it would be a positive return.

The management of data resources within the DHHS needs to be consolidated. The statistical systems currently operated by the NCHS and the widely-applicable, general health surveys conducted in other operating divisions should be brought together under a single administrative unit. We propose that this administrative unit be within a broader Health Information, Communication and Data Agency.

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

The proposed Health Information, Communication and Data Agency will play a leadership role in both the content that is encompassed by the NHII and the infrastructure systems that acquire, store, move, and apply that content. The NVCHS Workgroups provide two approaches to organizing content encompassed by the NHII. One approach organizes content by the end-user: individuals, providers, and communities. The other approach organizes content according to the determinants of population health: biological, behavioral, social, environmental, etc.. The new Health Information, Communication and Data Agency should fully support both content frameworks.

Leadership

It is worth noting that at the present time there is no discrete body in the executive branch of government charged solely with coordinating the health science and technology issues (particularly health information technology) that crosscut the existing departments and agencies.

We feel strongly that the overall leadership at the White House level is an imperative. Within the existing structure, this could be fulfilled through a two-sided approach. A Domestic Policy Council initiative to articulate and coordinate policy could be put into operation with support from the Office of Management and Budget.

However, we see the need for an interdepartmental Council of Population Health Impact Officers (CPHIO) to complement the existing White House policy and management structures as well as the line authority of the DHHS. In the CPHIO concept every department of the federal government that contributes to Healthy People 2010 (e.g. transportation, education, agriculture, etc.) is designated as a "population health key agency." Each of these agencies would have a Population Health Impact Officer who is responsible for raising the awareness of health impacts and who works with the CIO of that agency to establish "key data and information links" to a "virtual population health data center."

The success of this virtual health agency model will depend on the ability to develop state models that reflect the same level of collaboration and integration. To develop these models we suggest selecting a group of three to five state health agencies that are information "pioneers." These states would develop replication models for statewide health information infrastructures.

Another of the keys to success are state and local relationships. We recommend that each of the pioneer states develop federally funded demonstrations with leading communities within their jurisdiction to show how authority can effectively be passed down and data can effectively roll back up in the process of the community being empowered to take control of its own health issues.

Budget

Several concepts will be useful in constructing budgets for NHII and 21st Century Health Statistics:

  • Continue to apply the dual-use principle of government research and development through an initiative to cross-fertilize defense and civilian approaches to population health.
  • Design and test a Hill-Burton type model for NHII financing that use planning grants and loans to non-profits.
  • Design and test a Fannie Mae type model for NHII financing that creates secondary markets for higher risk NHII enterprises.
  • Design and test a public utility model where the company that delivers the product – in this case, information as opposed to power – provides a channel to the customer for a marketplace of competing vendors.
  • Identifying the value created by investing in the population-based side of the NHII by documenting its social and economic return.
  • Eliminate the conflicts in the Communication Acts of 1996 that prevent universal access funds from reaching their intended use in the development of rural health information infrastructure.
  • Invoke the Information Technology Resource Management Act (ITRMA) requirements for return on investment analysis.

The Information Technology Resource Management Act (ITRMA) views information systems as capital investments. The director of the Office of Management and Budget (OMB) is required to assess the full life-cycle value of these investments including cost/benefit and risk analysis. Before the information technology investment plans are implemented, ITRMA requires that single-agency, multi-agency, and government-wide mission-related processes and administrative methods be analyzed and revised. Thus, the mechanisms necessary to carrying out the goal of incorporating population health informatics into a wide range of missions in various departments are already in place through existing law and regulation.

The future benefits that can be achieved by applying the NGI to population health have more to do with content than technology and are more strategic than operational in nature. While the Chief Information Officer (CIO) Council has helped integrate and oversee much of the technical and operational base needed for population health to advance, this entity cannot provide all the conceptual, analytical, and health policy direction we need.

Implementation

We see operational management and accountability as keys to the successful government participation in developing the NHII. We recommend that the Health Information, Communication and Data Agency act as the lead agency for the proposed 14 billion dollar Health Information and Communication for America Initiative. One of the functions of this central management office will be to plan, sponsor, and disseminate NHII tool sets. Every population health key agency within the federal government and their state and local counterparts will have both general and agency-specific data access tools.

  • De-identification and confidentiality tools
  • Access control tools
  • Query and analysis algorithms
  • Problem-solving and work process
  • Composite sites
  • Service-to -the-citizen toolkits

Conclusion

The task of writing the conclusion to a paper so broad in scope is daunting. While it does not offer solutions for all the problems in the health world, it does shape concepts that could permeate the whole system in preparedness for the new century.

Enhancing the NHII and incorporating third-generation technology are core concepts that expand significantly the accelerating use of technology in the health field. Many examples were given of the uses of information technology by the government, non-profit and private sectors of our country. Partnerships between different combinations of these sectors were described as was the value this technology has for developing a new perspective on our statistical system. The 21st Century health statistics system should include input from human services, housing, the criminal justice system, discrimination surveillance, and other sources that impact population health.

The difficulties of data gathering on the federal, state, and local levels were surveyed and related to their affect on population health. The shortcomings of the statistical system, the impacts of those shortcomings on population health, and the consequent compromising of healthcare on the community level are the primary concerns of this paper.

The many complex subjects discussed and the interrelationships between them converge to form several relatively simple axioms. First, the focus of our health system must be enabled by collaborative efforts at the community level. Secondly, to date, with all the best efforts of many, many talented people, we have not attained optimal health for our citizens. And third, the ramifications at the local level of a newly conceived community-oriented National Health Information Infrastructure could be key to successful health and wellness for our citizens. This new system of health statistics needs to be based on the "quality of life model" that incorporates the determinants of health framework for collecting data, organizing information, and disseminating knowledge.

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Appendix: Transcript of Dr. Lee's Testimony

I am delighted to have this opportunity to testify on the reports of the workgroups of the National Committee on Vital Heath Statistics - the National Health Information Infrastructure Work Group and the Health Statistics For the 21st Century Work Group.

I have carefully reviewed their interim reports: Toward a National Health Information Infrastructure and Shaping a Vision for 21st Century Health Statistics with my son, Paul Lee and his professional colleague, Ben Abramovice. The three of us have reviewed the interim reports and the three of us will submit a detailed report in January to the NCVHS on these issues. My comments today are based on the work we have done together on the issues.

The reports build on a great deal of work within DHHS and the federal government - some of it dating to the founding of the National Center for Health Statistics, some from the work begun by the Advanced Research Projects Agency (ARPA) that led to the internet and a good deal since the High Performance Computing and Communication Act of 1991 and the Telecommunications Act of 1993.

Like other in these public meetings, I have been asked to comment on: (1) Barriers to implementing the NHII, (2) Recommendations for federal action related to the NHII, (3) Public-private collaboration on health statistics, and (4) Any other recommendations regarding the reports individually or as a package. I will focus on barriers, recommendations related to the NHII and other recommendations.

 

Barriers

Barriers to implementing the NHII were described in the report "Toward a National Health Information Infrastructure", as not technological, but "legal, societal, organizational and cultural in nature" (p3). We agree. The list included:

  • Privacy Protection: The report stated "the most significant immediate barrier is the lack of comprehensive privacy protection for personal health information"
  • Information as both a private resource and public good
  • Standards
  • Quality standards for online information
  • Technology, particularly security technology
  • Cost - in both the public and private sectors
  • Attitudes and practices - in this the report notes, among other things, "public health will need to include in its toolkit integrated data systems; high quality community level data; tools to identify significant health trends in real time data streams; and geographic information systems. (Linda Newhauser & Jonathan Fielding)
  • Equality - the benefits must be shared by all.

 

Mary Jo Deering had earlier described the barriers as cost, geographic location, literacy, disability and capacity. All of these affect equity. These barriers are particularly relevant to the personal health domain. (Barrier: medical care as a market good, not a public good). Currently, the NHII is least developed in the area of public health, human services related to health, and community health. The strategic commitment to the community dimension of the NHII is a major conceptual milestone that sets US policy firmly on the path to integrating population heath strategies into the NHII.

As we heard in earlier testimony, there are formidable barriers to translating this strategic vision into reality. Problems identified by a DHHS working group reporting to the Assistant Secretary for Planning and Evaluation Include:

  • Lack of adequate capital funding
  • Fragmented approach
  • Lack of collaborative effect
  • Gaps in defined areas of need
  • Lack of unifying plan of development and implementation
  • Untimely unsuccessful implementation
  • Lack of consistent quality and quality control
  • Lack of uniform data standards
  • Lack of authoritative mandate

Many of these barriers are also identified in the NCVHS report on the NHII. Let me focus on just two of these barriers: fragmented approach and lack of collaborative effort. In 1991, James Mason, the Assistant Secretary for Health created a Task Force on State and Community Data, which initiated a review of both existing and planned data resources. I received a report from the task force in October, 1993, when serving as the Assistant Secretary for Health, entitled "Inventory of Public Health Data Projects and Systems". As I recall, the report described more than 200 data systems, which could be categorized into six broad groups: 1) Vital and Health Statistics, 2) Population Health Surveys (e.g. HANES), 3) Health Care Services - Utilization, Expenditures, 4) Disease Surveillance, 5) Research Findings, 6) Reporting Requirements for Federal Grant in Aid Programs

The great majority of these resources were developed to track particular disease control programs, indeed 75% of the data systems were related to infectious agents, disease states and medical treatments. There was a lack of population heath data systems, although some surveys, like HANES, were population health based.

The departments 2001 Health Informatics Initiative identified areas that need to be worked on so that the DHHS can begin to address the current deficiency in population health data. Three areas will be important: 1) Funding state level projects that apply new informatics and statistical techniques to model population health dynamics; 2) Linking health and human services information, and 3) Creation of new informatic methods to assess discrimination.

Still to be resolved is the issue of interagency collaboration. The current reality is clearly dysfunctional in an increasingly complex world. To deal with these barriers requires leaders who believe such collaboration is necessary and adds value. It also requires such objective things as formal interagency agreements that include personnel, budget, equipment and space assigned to the collaborative task; delegations and accountability relating to the task and administrative services to support the work.

Less formal networks can also achieve a great deal when the focus is clear. Collaboration with state and local governments is equally critical to building the NHII, as part of the public health infrastructure for the 21st century.

 

Recommendations for Federal Action

The federal approach to developing the national infrastructure has resulted in many achievements, and the report by the NCVHS is another step along the way. But more must be done. Let me focus on three issues: 1) Leadership, 2) Funding, and 3) Administration Wide Management Structure.

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 10 - year initiative that will serve to build out the National Health Information Infrastructure.. The initiative will provide capital investment in development and related operative expenses but not currently budgeted expenses. We anticipate a need for funding streams in tactical categories: 1) overall leadership, 2) overall management, 3) a new data agency, 4) a concentration of effort, and 5) cross-cutting administration-wide coordination, 6) deployment and dissemination.

We recommend that the overall leadership of the initiative come from the White House. 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 implementation of the directives of the White House leadership. 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. In order to provide a true focal point for the day-to-day work of building the NHII, we propose the creation of a new agency within 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. The agency would be formed by combining the existing National center for Health Statistics with the major general purpose survey activities currently conducted by a variety of operating divisions. HICDA would also provide liaison for the data acquisition activities that remain in other DHHS operating divisions and with data sources external to DHHS. 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 CDC, NIH/NLM, HCFA and AHRQ. Substantial resources should also be applied through HRSA, SAMHSA, and IHS. The need for liaison and cross-departmental teamwork falls into the broad areas of service delivery and financing as well as community and population health. The implementation of the Initiative's investment in Departments other than DHHS will be directed by a Departmental Health-Impact Officer. These new funding streams will augment those departmental 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 Veterans Administration, Department of Defense, Federal Bureau of Prisons, and Indian Health Service. The investment in informatics related to community and population health should fund work in all departments which 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.

Implementation will not be complete until the core national infrastructure is reflected in the capabilities of each state and ultimately the infrastructure must reach into each local community. To succeed the initiatives 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 on an agreed-upon 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, an 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.

Part of the A.M. testimony from the private-venture perspective was that the end cost of NHII development is estimated in a range between $200-500 per capita, if you assure $280 to 300 million Americans the total investment would be $60 billion. So our proposal is that the Federal government provide about one-fourth of the investment. Auction of band widths in 2002 could generate more than enough revenue to provide a source of federal funds.

 

Let me conclude with some other recommendations.

First, History: The technologies that led to the current information age began being developed by the U.S. military in the 1940s. The integration of multiple computer networks had its origins in the defense research community during the 1960s. The Advanced Research Project Agency (ARPA), created by President Eisenhower in 1953 played a key role in these developments, pioneering the timesharing, computer graphics and packet switching by the late 1960s. These innovations provided the foundations for ARPANET, the precursor of the internet. The DOD continued to develop the foundations for the national information infrastructure through its work with industry in network design, privacy, reliability, security, inter-operability, scalability, domain specific applications, technical standards and technology management. In the 1980s the internet was formed, with aid from the national science foundation funding the development of equipment to enable other networks to link to the government network forming a vast system of computer networks linked by telephone lines. In 1989, the World Wide Web, the favorite network of the internet, was created.

In the year 2000, the next generation internet (NGI) is in the process of development to increase security, reliability and other elements. At the same time, communications technologies are evolving rapidly. We have gone from voice communication with the telephone over copper wires to wireless systems. The first generation (1G) was analogue cellular. The second generation, (2G) mobile communication was digital cellular. The third generation (3G) is now developing and will include broad band wireless communication (using the global grid of satellites) and high performance internet.

I review these developments very briefly because I believe that the report on the National Health Information Infrastructure should include a more detailed description of technological advances, including the role of the federal government in making it possible; the legislation, particularly of the past decade that creates the framework - currently incomplete - for the National Health Information Infrastructure; and, the reports of various advisory groups that deal with the issues.

The conceptual framework proposed for future health statistics that is based on the population's health is absolutely critical if this nation is to move its health policies from one based on the biomedical paradigm to a population health or determinants of health paradigm. This shift has already been reflected in Healthy People 2010, which includes a new section, Determinants of Health. This framework wad dealt with in more detail in the background paper by Black, Roos and Roos, "From Health Statistics to Health Information Systems: A New Path for the 21st Century". They noted in their paper: "The population health framework, as it is known, reorients us to consider health and the improvements of health (rather than a focus on disease) as fundamental goals of the health system" (p 3)

I would hope that in both the Report on Health Statistics for the 21st Century and the National Health Information Infrastructure, that a more detailed discussion of the population health perspective would be provided. (See report by Halfon, et al at UCLA). The Institute of Medicine's Leading Health Indicators for Healthy People 2010 Final Report

Finally, an area that is given relatively little attention in these reports - the community. (Linda Newhauser spoke eloquently earlier today on the Community). There is now a vast literature on civic engagement, most of it outside the health sector. These efforts have recently been described by the Aspen Institute Roundtable on Comprehensive Community Initiatives For Children and Families:

"They are neighborhood-based efforts that seek to improve the lives of individuals and families, as well as the conditions of the neighborhoods in which they reside, by working comprehensively across social, economic, and physical sectors. They are based on the concept of 'Community Building" and are structured to promote individual and community empowerment."

The efforts of communities to develop comprehensive, integrated, coordinated health programs through community partnerships to deal with problems identified by communities are often hindered by the proliferation of federal categorical programs.

The Institute of Medicine, in its 1997 report: Improving Health in the Community: a Role for Performance Monitoring, dealt with some of these issues in detail. Foundations, including the Kellog Foundation, the Annie Casey Foundation and a number of community foundations are funding projects at the local level to support community initiatives. The Nation's Health Information Infrastructure and Health Statistics for the 21st Century must be powerful tools to aid communities. This needs to be dealt with in more detail - perhaps at a future hearing.

About the Authors

Ben Abramovice, MBA, PhD and Paul Lee, MArch are principals of the consulting firm Abramovice-Lee & Associates. The firm specializes in internet health applications, health care capital planning, and health industry innovation. Their major corporate clients have included Lockheed-Martin, Loral, Centex-Rodgers, Brown&Root, and Guy F. Atchinson. They have advised and assisted numerous internet-based start-up companies in the health field including Health Hero Network, ClickHealth, Community Services Network, Windom Health Enterprise, Care Journey, and iMetrikus. They have also worked on projects for county health departments, academic health centers, long-term care facilities and non-profit healthcare organizations.

Dr. Abramovice's experience in health facility administration includes running Laguna Honda Hospital, the country's largest municipally acute/chronic care hospital. While at the 1455 beds facility he successfully planned and implemented an innovative networked hospital information system. He has worked with both the Institute for Health and Aging and the Institute for Health Policy Studies at the University of California, San Francisco. His international consulting includes work with the Brazilian Ministry of Health and the Shanghai Health Department. He is the author of Long Term Care Administration: the Management of Institutional and Non-Institutional Components of the Continuum of Care. His numerous awards and honors include a personal commendation from President Reagan.

Paul Lee served on the IEEE Medical Technology Policy Council, created the internationally acclaimed Circle of Health Website, and is a co-author of the Guide to Health Care Resources on the Internet. He has also served as an advisor on health applications to the Lawrence Livermore National Laboratory's Open Systems Laboratory.

Dr. Philip R. Lee is Senior Scholar, Institute for Health Policy Studies and Professor Emeritus of Social Medicine, Department of Medicine, School of Medicine at the University of California, San Francisco and Consulting Professor in Human Biology, Stanford University. From 1993-1997, he served as Assistant Secretary for Health in the United States Department of Health and Human Services. Before going to Washington, Dr. Lee served as Director of the Institute for Health Policy Studies, which he co-founded in 1972. He served as chancellor of UCSF from 1969-1972. Prior to joining the UCSF faculty he was Assistant Secretary for Health and Scientific Affairs in the Department of Health, Education and Welfare from 1965-1969, and was Director of Health Services in the Agency for International Development from 1963-1965. Dr. Lee was President of the Health Commission for the City and County of San Francisco from 1985-1989, and from July 1986-1993 he served as Chair of the Physician Payment Review Commission established by the U.S. Congress. Dr. Lee has also served on the boards of the Mayo Foundation, Carnegie Corporation, Population Education Inc, Sun Valley Forum, American Foundation for AIDS Research, Kaiser Family Foundation, and the Jennifer Altman Foundation, and the Lucille Salter Packard Children's Hospital. He is the author or co-author of more than 150 articles in the health field, and he has co-authored numerous books, including Pills, Profits and Politics; Primary Care in a Specialized World; and Exercise and Health. He has edited two books, one (The Nation's Health) is in it's sixth edition. Dr. Lee has recently received the Institute of Medicine's Gustav O. Lienhard award for his "unequaled contributions to improving health services in the U.S. and abroad, as practitioner, advocate, researcher, policymaker, administrator, and public leader". Last year he also received American Public Health Association's Sedgwick Medal for his "distinguished record of service to public health and his tireless efforts to advance public health knowledge and practice."

ENDNOTES

 

Monitoring CHF patients using case management programs to reduce re-admissions and in-patient costs has become popular in recent years. Numerous studies have demonstrated that care management can reduce hospital costs by reducing the number of hospitalizations and ER visits. For example, Landi et al. (1999), Warner and Hutchinson (1999), West et al. (1997), Shah et al. (1996) and Rich et al. (1995) have reported reductions in the number of hospitalizations, length of stay (LOS), and costs with care management.

2 The PacifiCare CHF program, "Taking Charge of Your Heart Health," was implemented in California in 1999. Through an interactive telephonic support program, the patient is provided with coaching, education, and reinforcement of self-care management skills. The program features in-home daily monitoring using the Health Hero Health Buddy personal information appliance, timely care manager intervention, and physician feedback via the Health Hero iCare Desktop.

3 The outcomes results presented include a meta-analysis of cost savings from three Health Hero implementations, an engagement with the RAND Corporation to evaluate clinical outcomes, compliance and productivity, and additional efforts on patient and care manager satisfaction. Data from five Health Hero sites are analyzed and presented in this report available at http://www.hhn.com.

4 The interim report cites the following 1) The High Performance Computing Act in 1991, 2) The Next-generation Internet Act of 1998, and 3) The Networking and Information Technology Research Development Act of 2000.

5 The interim report cites the following: Making a Powerful Connection: The Health of the Public and the National Information Infrastructure in 1995; 2) The final report of the Health Information and Applications Workgroup of the President's Information Infrastructure Initiative Health Care and the NII published in 1996; 3) The Health Information and Applications Workgroup's Consumer Health Information White Paper in 1996.

6 The interim report focuses on best practices in Australia, Canada, and the United Kingdom National Health Service.

7 Motivated by its need for rapid communication in times of national emergency, the DoD has continued to aid industry in improving the National Information Infrastructure (NII). DoD contributions include innovations in network design, privacy, reliability, security, interoperability, scalability, domain-specific applications, technical standards, and technology management.

8 As a result of implementing the GPRA, we believe that the alignment of executive action with legislative intent is clearer and more precise than before. Department-wide strategies and goals are consistently translated into measurable objectives and performance plans within the various operating divisions of the departments. The GPRA has led to renewal and cohesion in the federal government. Responsiveness to citizens has improved as has customer/beneficiary satisfaction.

9 HHS is proceeding carefully in implementing the many elements of the HIPAA statute. Before adoption, options have been evaluated and the extensive public comments has been be given serious consideration. The need to respond to these as well as the numerous entities that are required to evaluate the recommendations has delayed the implementation timeline for the Administrative Simplification provisions of HIPAA.

10 The CIO Council is a forum to improve agency practices on such matters as the design, modernization, use, sharing, and performance of agency information resources. The CIO Council communicates its findings to the Office of Management and Budget and other executive agencies. Membership on the Council is comprised of CIOs and Deputy CIOs from all major federal executive agencies.

11 Between 1993 and 1995, the Task Force on State and Community Data reviewed how health data is acquired, converted into information through analytic processes, and used for communication through dissemination processes. During this period, most data policy experts focused their planning efforts on identifying strategies that could be developed for redesigning health data resources to support a reformed healthcare system. A few visionary leaders, however, were beginning to see that the Internet could and would transform the health field in both traditional reimbursement and more recent capitated payment systems.

12 Several points stand out among the conclusions and recommendation in the CSTB final report. Ensuring widespread access to the Internet will be essential to achieving its promise in health applications. Federal agencies such as the VA, the DoD, HCFA, NIH, and IHS should serve as role models and test beds for Internet health applications. Industry, academia, and government need to work together to find appropriate business models for e-health activities. Public and private health organizations should incorporate the Internet into their strategic planning.

13Outreach: We also must realize that American health policy is based on an instinct to reach out and include the disadvantaged. The Internet's scale and low cost make it a natural to include this group when providing widespread information dissemination.

14Current Knowledge: The body of knowledge in the health field is increasing rapidly. As this trend accelerates, the ability to immediately update content becomes imperative. In short, Internet technology with universal access will help all sectors of our population to keep pace with the most current available health information.

5Social Support: We now know that social support networks are a significant factor in population health. Greater ability to promote interaction and social support among users (e.g. through chat rooms) and between consumers and health professionals is one of the most important potential benefits of the e-health revolution.

6Personal Control and Choice: Well-designed IHC applications have been shown to be beneficial in a number of important ways. This technology can be used to improve access to health information by both providers and consumers and to individualize the way the information is presented. Broader choice, for example, is valued in the American healthcare system and is an important policy priority. Internet technology can be used to help consumers better understand the choices they have and how their choice impacts them. The convenience and satisfaction of healthcare consumers is also a high priority for Americans, and the promise of the Internet to deliver what they want to know on demand is clearly valuable.

17 The directory was envisioned as having data links to source organizations, consolidated documentation of analytic methods, a repository of analytical tools, and a cross-linked compendium of results and publications. This extensive set of integration activities would consistently cross agency lines to facilitate collaboration, develop uniform approaches, and identify common data sources. This activity should also link complementary systems and combine both analysis and dissemination efforts.

8 What health seekers read online influences their decision about how to treat an illness or condition and leads them to ask their doctor new questions or get a second opinion from another doctor.

9 Online health seekers focus on getting information about an immediate medical problem, most often in conjunction with a doctor’s visit. Resources are typically sought after they had been to a doctor and this is usually after a diagnosis has been given.

20 The development of health information policy in Australia has been carried out through a collaborative intergovernmental process. Its goal is to improve the quality of national health information through cooperation and program development with an emphasis on an evidence-based approach. Australians are also demonstrating leadership by expanding their infrastructure to include a wider range of health determinants. Components being added to emphasize population health include welfare, community services data, and housing assistance data.

21 Canadians are taking steps in the direction of expanded population health capabilities. Their efforts aim at developing more integrated statistical systems and obtaining consensus on the indicators and determinants of health. Overall, however, the actual official health info-structure plan and its implementation are confined primarily to the personal and provider dimensions of health with emphasis on appropriate, efficient, and effective medical services. Additionally, the Canadian Office of Health and the Canada Health Infoway offers its US counterparts a useful model for essential health information policy areas such as privacy and confidentiality protections for each individual beneficiary.

22 The UK model is a case study of what might be called the Health Information Czar approach to developing a national health info-structure. Committing £1 billion to this initiative, the government established a new NHS Information Authority responsible for developing national products and standards of high-quality information. The UK vision seeks to develop personal, provider, and community dimensions of their system. In short, this health information initiative is the main way the UK uses to promote the integration of personal and population approaches to health improvement.

23 Health Canada is the federal department responsible for helping all the people of Canada maintain and improve their health. In the case of the indigenous people of Canada, special policy considerations prevail. The Canadian Aboriginal Health Infostructure offers a unique approach to health information. Health Canada considers the Aboriginal Health Infostructure (that is strategically interconnected to the Canada Health Infoway) an autonomous and distinct institutional development consistent with Aboriginal interests Health Canada provides financial resources for Aboriginal groups to under-take consultation and communications with governments, private sector groups, and each other. Aboriginal groups use these funds to confirm and further develop the concept of the Aboriginal Health Infostructure, define plans for its development and implementation, and determine the nature and scope of Aboriginal participation in the Canada Health Infoway. Health Canada, in partnership with other federal departments, views the development and implementation of the health info-structure in Aboriginal communities as part of a sustained commitment to the development of an economic infrastructure. Their health info-structure initiative is seen as a way to facilitate employment, career development, capacity building, increased economic development. Personal and community income, community stability, and training opportunities are seen as improvements to the health and social condition of Aboriginal peoples. The United States should aim to meet or exceed the Canadian performance in this important area.

24 When Karen Landeck, RN, an AIDS-certified registered nurse, saw how difficult it was for HIV patients to access medical information on the Internet she helped create HIVliving.org. Landeck’s site uses sophisticated tools to allow patients to chart and graph their T-cells, viral load counts, and weight. Users also can record their medical history and monitor their medications.

25 The Internet Health Care Coalition is a private, non-profit, non-partisan organization that is devoted to placing quality healthcare resources on the Internet. Internet Health Care Coalition considers well-informed stakeholders a key to success in this arena. They seek a self-regulated Internet in which voluntary guidelines provide effective means for the legitimate dissemination of accurate healthcare information. They look to the online community itself to promote ethical, innovative, and high-quality sources of healthcare information and services. To this end they have started developing an eHealth Code of Ethics, are formulating a strategy for implementing the Code and are working to foster public awareness of the code and its importance.

26 Through a contract with Healthwise, Kaiser Permanente, the country's largest non-profit, integrated health maintenance organization, provides consumer health information to its 8 million health plan members nationwide. Each family that belongs to the health plan gets a copy of Healthwise Handbook that includes icons directing members to more in-depth information on the Website, KPonline.org. The book works together with the Website, member outreach, newsletters, and prevention programs to provide an integrated system of information to Kaiser members.

27 "Information is powerful medicine, and books are still the best way to get good information to the most people," said Donald W. Kemper, chairman and CEO of Healthwise. ``By connecting these self-care handbooks to KPonline.org, we are providing members with the best of both worlds – the convenience of print and the breadth, depth, and currency of the Internet.''

28 The Mayo Clinic’s Mayohealth.org began its free service to the public in 1995. The site now has more than 6,000 pages of unique content covering health concerns from infant care to aging updated every weekday. Their purpose is to serve as a reliable source of health information for the public.

29 IntelliHealth, started as a collaboration between Johns Hopkins and Aetna. It is one of the premier consumer health portals on the Internet. Harvard Medical School (H.M.S.) has recently entered an agreement with U.S. Health Care (Aetna) to enhance the content and usability of the award-winning IntelliHealth Website. Over 70 Harvard Medical School faculty will develop and provide editorial review for health content on this site.

30 In addition to the Harvard support, IntelliHealth Inc. delivers content through an in-house editorial staff and licensing agreements with more than 400 major broadcast, print, and interactive media outlets. IntelliHealth also works with more than 150 top health organizations and major medical publishing companies.

31 The consumer’s use of the Internet is outpacing the rate at which physicians are getting online for their patients, yet consumers want their physician's involvement in identifying quality health information online. The American Medical Association has invited interested physicians to participate in the Internet Health Road Show, a project developed in association with Intel Corporation. Physicians at 20 different sites will be given the opportunity to increase their knowledge about the latest Internet technologies, identify and apply the most appropriate Internet solutions to their practices, and explore the Websites that make a difference in doctor-patient relations and patient care. The road show may encourage Internet solutions that enrich the bond between physicians and their patients.

32 DoD’s information management program uses Internet technology to support all categories of business process. MHSS manages information to improve understanding of how to effectively and efficiently provide health services and to enable informed choices by providers and beneficiaries based on the recognition of best value. DoD works with the private sector for the elimination of paper-based business transactions. DoD’s initial efforts were in support of acquisition reform. They then extended electronic commerce and electronic data interchange to all functional areas of the department including medical and financial. Their example is now being followed in other departments such as DHHS, the Department of Veteran’s Administration, and the Federal Bureau of Prisons.

33 The VA's DSS supplies information for effectively managing the VHA's health assets at the regional (VISN) level. It integrates selected resource allocation and clinical procedure elements from each episode of care into a longitudinal format which allows statistical outcomes for comparison among the VHA facilities. The DSS allows the VHA to utilize workload and cost data to compare among facilities.

34 The VA's DSS also allows medical centers to perform online analyses, modeling, clinical performance measurement and clinical quality management.

35 The VA Smart Card demonstration showed how the card would have critical medical data such as blood type, drug allergies, etc., as well as other information needed to access and utilize all VA services. Implementation of this system will begin in January 2002..

36 How the IHS leverages its professional assets is demonstrated by the pioneering work of the Diabetes Center of Excellence at the Phoenix Indian Medical Center. Nurse care managers communicate frequently with elderly Indian diabetics living in the Phoenix metropolitan area about self-care and behavioral health concerns. Technological innovations allow the care managers’ caseloads to increase up to ten fold and, at the same time, provide an improved quality of service leading to better health outcomes.

37 For example, Indians have a higher incidence of diabetes than any other sub-population in the United States. At the same time they receive only 60% of the funds needed to deliver the same level of service that the federal employee benefit package provides.

38 The state-of-the-art medical center at Anchorage and the medical centers at Fairbanks and Juno are linked through tele-medicine technologies to regional health facilities. In this way, the expertise of specialists is spread to staffs of smaller health centers. Because of their extreme isolation, satellite linkage to these core medical services is seriously needed to allow them to connect to this network and manage more conditions locally without requiring expensive med-evac. In addition, properly trained staff must be available to utilize these advanced technologies.

39 Some tribes, such as the Navajo, have telephone service to only one-fourth of the homes within their trust land. In addition to the lack of telecommunications capacity, there is the need for hardware, software, and technical support.

40 Actuarial publications and data include the Report on the Development of Resource-Based Malpractice (RVUs) and the 1999 Resource-Based Practice Expense Data Files, Public Use Data Files (PUFs), and National Health Care Indicators and Expenditures (NHCIE).

41A Medicare information bases include Medicare Enrollment, Medicare Utilization and Expenditure Tables, Medicare+Choice Payment Rates, Medicare Co-payments (deductibles, coinsurance and premium amounts).

41B The Clinical Practice Expense Program (CPEP) has a data collection and analysis methodology for generating procedure-specific practice expense estimates. Disproportionate share adjustment (DSH) data for hospitals (an add-on to HCFA reimbursements for academic centers of excellence) is calculated through a complex formula.

42 Other HCFA statistical publications include the Medicare Profile Chart Book from the 35th Anniversary Event, A Profile of Medicaid Chart Book 2000, HCFA Statistical Highlights and Information about Medicare and Medicaid, and The Annual Compilation of National Health Care Data. Medicare maintains HEDIS 3.0 Data, generates managed care statistics and reports, as well as Medicaid statistical and data information.

43 The outcomes to "customers" such as beneficiaries, researchers, legislators and the public are reliant on data management as a core process. This vision views business functions as operations that support outcome goals. This new system provides an environment that supports the existing business functions but makes them more responsive to changing business needs and emerging technology. It recognized that components must be fitted together seamlessly, monitored, and controlled: a form of process definition.

44 The ITA would link business strategy and direction with information technology development. It would reduce the incongruencies between the mental perspective of the departments employees and the implementation of business software applications that had existed before.

45 The Medicare Compare Database includes information about accredited managed care plans that serve nearly 6 million Medicare beneficiaries across the country. This user-friendly database is designed to educate beneficiaries, their family members, or others who might assist them about their healthcare options. This resource empowers beneficiaries and expands meaningful choice through a practical use of the Internet.

46 HCFA uses the Website medicare.gov to inform Medicare beneficiaries about the Medicare program including the new Medicare+Choice options that are available. This effort is a large information campaign directed toward senior consumers that, in increasing numbers, use the Internet.

47 Individual may find may find healthfinder® particularly useful in relation to prevention. Living healthy, finding diseases early, and taking steps to prevent the complications of diseases are all ways people can play a preventive role in their own health.

48 Launched in April 1997, healthfinder® served Internet users over 1.7 million times in its first year online; in 1999, the site received 94 million hits and 4,549,810 visits! The healthfinder® presents information from 32 contributing federal agencies and many other not-for-profit and voluntary organizations and educational institutions.

49healthfinder® can lead a consumer to selected online publications, clearinghouses, databases, Websites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

50healthfinder® links to organizational resources such as home pages, toll-free information numbers, and services.

51 A few of their most popular search topics appear on the home page. healthfinder®'s 30 top search topics are highlighted on a page called "Hot Topics".

The "Online Health News" section of the site provides up-to-date releases from the Surgeon General, National Institutes of Health, Centers for Disease Control and Prevention, state health departments, and major nonprofits as well as major newspapers and TV and radio networks.

A "Special Health Events" page helps highlight activities like National Breast Cancer Awareness Month. Everyone has many health decisions to make these days from what to eat to which health insurance to buy.

"Smart Choices" gives you tips for staying well, eating right, exercising, taking care of your family’s health, choosing a good doctor or health plan, reporting possible health fraud, and more.

In addition, by searching for general terms you can find many positive resources through healthfinder®. For example, lifestyle yields 110 Web resource links, behavior yields 108 links.

52 In July of 1956, the National Health Survey Act was enacted to implement a continuous survey and special studies of the nation’s health. In 1960, the National Center for Health Statistics was established by merging the National Health Survey and the National Office of Vital Statistics. The NCHS confidentiality protections and a cooperative federal and state system for collecting national statistics were legislated in 1970. The Health Services Research and Evaluation and Health Statistics Act of 1974 codified its mandate and legislative authorities to undertake and support research demonstrations and evaluation regarding survey methods. It was also directed to provide technical assistance to state and local jurisdictions. Concurrently, the National Committee of Vital and Health Statistics was established as an advisory committee to the secretary. The Cooperative Health Statistics System was instituted in 1978 to support, coordinate, and evaluate state and federal statistical systems. In 1989, the Congress established the Agency for Health Care Policy and Research to support studies of healthcare effectiveness and outcomes. In the process, legislative authority for the National Center for Health Services Research (NCHSR) was abolished. In the Disadvantaged Minority Health Improvement Act of 1990, NCHS was designated to collect detailed data on racial and ethnic populations and sub-populations.

53 Distribution of information from the CDC's Public Health Practice Office to state, local and industry leaders is accomplished through programmatic ties with the Association of State and Territorial Health Officers, the National Association of City and County Health Officers, and the Healthy People 2010 consortium.

54 As we pointed out in the discussion of patient confidentiality, one motivation for being able to aggregate safeguarded data from electronic medical records is to conduct more and better health services research. Research on variations in clinical practice patterns provides a key to identifying those diagnostic and treatment pathways that are most likely to improve outcomes. In short, today’s standards of care are continuously improving due to the secondary analysis of de-identified encounter data.

55 The National Guideline Clearinghouse will make evidence-based clinical practice guideline available free to every physician, health plan, provider and consumer with computer access. The coalition of sponsors invited organizations, professional societies, and other developers of practice guidelines to submit complete guidelines for inclusion in the World Wide Web-based National Guideline Clearinghouse.

56 AMA brought to the partnership its unique medical guideline evaluation process grounded in the knowledge, training and experience of physicians. AAHP balances the physician perspective with its expertise in the complex dynamics of healthcare resource allocation. AHRQ brings both funding and in-kind support to the NGC venture.

57 AHRQ Administrator Dr. John Eisenberg said another factor behind the creation of the IDSRN was that the delivery systems’ large investment in infrastructure has produced a rich source of data. This data will be applied to research aimed at informing private and public sector decision-makers evidence needed for critical decision that affect the progress of our nation's healthcare system.

58 To achieve this goal, research partners will be funded to explore two areas – those that inform about the development of the nation’s data and measurement capacity and those that inform the best practices of how to structure health organizations.

59 The IDSRN bio-terrorism initiative will focus on the use of information and decision support systems to enhance clinical preparedness in these critical situations. It will assess and improve linkages between health systems, local, state public health departments, and emergency preparedness units.

60 Small policy-thematic workshops have been the core of activities, although skill-building workshops and written products such as research syntheses and technical assistance documents have also been used for dissemination. Recently Web-based materials are beginning to be developed. The User Liaison Program co-sponsors workshops and participates in technical assistance activities. For example, it has partnered with non-profit foundations and national organizations such as: National Conference of State Legislatures (NCSL), Association of State and Territorial Health Officials (ASTHO), National Association of County and City Health Officials (NACCHO), and National Association of Counties (NACO).

61 In three years, the library has seen the number of searches on its MEDLINEplus database increase from 7 million to 250 million annually. The library estimates that members of the public do 30% of these searches for themselves and their families. A new service, MEDLINEplus, has grown rapidly in little more than a year and provides links to information on 350 diseases and medical conditions. Its strength lies in carefully pre-formulated searches of the MEDLINEplus database, which return references and articles useful to the average consumer. This is a good example of how the personal health domain and the provider health domain can overlap.

62 Another new service, ClinicalTrials.gov, was introduced by NLM on behalf of NIH in February 2000. This database contains vital information about thousands of clinical trials sponsored by the NIH and other federal agencies. Now patients, families, and members of the public can find out about cutting-edge research being conducted around the US and whether they are eligible to join a study.

63 The NLM made awards in February 2000 to fund electronic health information projects that will increase Internet access from middle schools serving low-income and educationally under-served students and through shopping malls and senior centers. These well-targeted projects are stimulating local and regional organizations to work together to provide electronic health information services for all citizens of the community.

64 A primary goal of the USPHS is to remedy the disparities in health status and access to services experienced by many segments of the American population. One such NLM program deals with toxic waste sites and other environmental and occupational hazards that are much more likely to occur near homes in poor and minority neighborhoods than affluent ones. The library has a program to train health professionals, community leaders, and others in minority neighborhoods to use the NLM’s databases of hazardous waste information. Additionally, the library has been working with institutions that serve minority populations to encourage use of NLM’s information services.

65 The NIH invests heavily in computer and information technology to manage data and model biological processes. There is also a continuing need for training specialists competent in computational biology.

66 GenBank database of DNA sequence information maintained by NLM’s National Center for Biotechnology Information is increasing to gargantuan proportion. The NCBI Website, where GenBank is made freely available, receives some 800,000 queries per day from 120,000 scientists and others around the world. In addition to academic institutions, major biotechnology and pharmaceutical firms are among the heaviest users of the NCBI Website. They not only search GenBank but also use NCBI-created computational tools such as those that allow researchers to use the growing body of known 3-dimensional structures to infer approximate 3-dimensional sequence structure from similarity relationships. NCBI scientists have also collaborated with colleagues from government, university, and commercial laboratories around the world to produce a new gene map that pinpoints the chromosomal locations of human genes. This milestone in the Human Genome Project, available on the Internet, will expedite the discovery of human disease genes and, by extension, contribute to advances in detection and treatment of illnesses.

67 An example on the international level is Multilateral Initiative on Malaria Research effort in Sub-Saharan Africa, of which the NLM is an important participant. These NLM-sponsored Internet connections result in better coordination and monitoring of research, prevent redundancy of effort, and improve research productivity.

68 Government participation in the NGI Initiative is currently managed by five federal agencies. Health applications of the NGI are managed by the NIH. The smallest funding allocation of each of the five entities goes to the National Institutes of Health (NIH). High-end medical technology is an area that has been funded through the health component of NGI. Advanced medical imaging, for example, requires more bandwidth than is currently available. Other health applications require a guaranteed level of service (for example, no data loss and assured privacy protection) not provided by today’s Internet. To help the health sciences effectively use the capabilities being developed in the next few years the NIH is supporting the development of innovative medical test-bed projects that demonstrate the application and use of the capabilities of the NGI.

69 HRSA directs national health programs that improve the nation's health by assuring equitable access to comprehensive, quality healthcare for high-risk and vulnerable groups through a series of grants-in-aid programs supporting states, local governments, and non-profit organizations. As the agency shifts from an operational to a strategic approach to information and communication, it will have to thoroughly reexamine how it pursues the goals and objectives that grow out of its mission.

70 The site includes the annual report America's Children: Essential National Indicators of Well-Being, a collaborative effort of 20 federal agencies. It is a thorough examination of the subject including information on economic security, social environment and education. The approach of a federal interagency forum has been successful at bringing experts together to solve issues relating to data gaps, redundancies, and comparability.

71 WHO has identified the need to integrate the management of childhood illness. As the US integrates its infrastructures that support child health we will be creating a resource base that can significantly benefit the campaign to reduce childhood suffering and death. We recommend focusing US contributions to the global health information infrastructure on the causes of child mortality. As much as 70% of childhood sickness and death worldwide are due to five conditions: acute respiratory infections (mostly pneumonia), diarrhea, measles, malaria or malnutrition. Most sick children present with signs and symptoms related to more than one of these conditions and this overlap means that a single diagnosis may be neither possible nor appropriate. Treatment of childhood illness may also be complicated by the need to combine therapy for several conditions. An integrated approach to managing sick children is, therefore, indicated as is the need for child health programs to go beyond single diseases and address the overall health of a child. To do this effectively the Health Information Infrastructures that underlie the child health systems need to be based on an integrated model.

72 New knowledge about women's bodies and minds is changing our understanding of what affects health - a blending of biology, culture and the choices they make. Risk, prevention, detection and control - four major factors that intersect again and again over a person's lifetime. This framework for thinking about women's health is applied to violence and injury, sexually transmitted diseases, HIV/AIDS, tobacco use, health in later years, reproductive health, plus breast and cervical cancer.

73 The NCFV Resource Center, as part of this service, provides a reference collection of approximately 10,000 books, reports, videos, periodicals and pamphlets. The collection forms a subset of the Health Canada Departmental Library network, and access to the center's holdings records are offered publicly through the Library's database.

74 This agency has produced the report "Older Americans 2000: Key Indicators of Well-Being" Information on minority and disability aging, the institutional populations, elder abuse, transportation and housing are included. By following this comprehensive group of data trends, efforts to improve the lives of the older American can be targeted.

75 The Longitudinal Study of Aging (LSOA) is a collaborative effort of the National Center for Health Statistics (NCHS) and the National Institute on Aging. The study is conducted by NCHS, and the data are collected by the U.S. Bureau of the Census. Baseline information for the LSOA came from the Supplement on Aging (SOA), a supplement to the 1984 National Health Interview Survey.

76 The focus of the LSOA was on housing, including barriers and ownership; social support, including number and proximity of living children and recent contacts in the community; retirement, including reasons for retirement and sources of retirement income; and measures of disability, including activities of daily living, instrumental activities of daily living, and ability to perform work-related activities.

77 As part of this initiative, OMH works with, and provides support to the Surgeon General and the Assistant Secretary for Planning and Evaluation; helped to identify health focus areas for the Department's Initiative; serves on the six health focus area workgroups, and the data workgroup; has taken over the administration of the Race and Health Website; and collaborates with the Centers for Disease Control and Prevention on the Racial and Ethnic Approaches to Community Health grants.

78 Some of OMHRC's services include referrals, publications, reference information, and access to its resource network -- a database of minority health professionals from across the country. OMHRC publishes a newsletter, Closing the Gap, which reports on federal, state, and community-based activities related to minority health. Each newsletter covers a different health topic and is available for free in both print and electronically.

79 OMHRC's HIV/AIDS Website focuses on 1) funding information 2) expanding the database and library, 3) building the capability of the Resource Person's Network with experts in the field of HIV/AIDS who will provide technical assistance to the community 4) publishing four additional issues of Closing the Gap on HIV/AIDS-related topics, and 5) increasing treatment and prevention messages related to HIV/AIDS.

80 Efforts are being made at many levels to include these populations in this most significant aspect of modern society. Without the inclusion of these groups, the "usability" of the technology is moot and their loss to the total society's health is monumental. The Web Accessibility Initiative (WAI) formulated by the World Wide Web Consortium, uses five primary channels in approaching this issue: technology, guidelines, tools, education and outreach, and research and development. Using adaptive devices and specialized software, physical disabilities can be accommodated. Whether WAI’s usability approach offers a remedy for the socio-economic access barrier remains to be seen.

81 The core concepts of the ICIDH-2, capturing both the positive and negative aspects of functioning as well as environmental factors. Body functions, body structures, impairments, activities and activity limitations, participation in life situations, participation restrictions, health conditions, plus personal and environmental contextual factors.

82 The National Institute of Environmental Health Sciences (NIEHS) in NIH performs research on the mechanisms of environment-related diseases. NIEHS is helping build the NHII through its work strengthening existing databases and registries and creating new ones that track and monitor exposures and diseases. The proposed National Twin Registry is an example of a proposed resource with impressive research potential. A National Birth Registry supporting long-term epidemiological studies that follow a child through the mother's pregnancy and into the later years of a child's life is another proposed resource with a strong potential for research.

83 The Agency for Toxic Substances and Disease Registry (ATSDR) is an agency of the United States Public Health Service, Department of Health and Human Services. It is authorized under the Superfund law to provide toxicological information, public health evaluation and epidemiological study of the impact of chemical exposures on public health.

84 The director of CDC also serves as administrator of ATSDR. The direction of ATSDR in the data policy arena is tied closely to the strategic planning and information resource planning of CDC.

85The National Center for Toxicological Research (NCTR) in the U.S. Food and Drug Administration (FDA) conducts research on the biological mechanisms of action underlying the toxicity of products regulated by the FDA. Two other operating divisions of the FDA produce and use environmental health data: the Center for Devices and Radiological Health and the Center for Food Safety and Applied Nutrition.

86 The National Institutes of Health has Environmental Health expertise in four major operating units: 1) the National Institute for Environmental Health Sciences, 2) the National Cancer Institute, 3) the National Institute of Mental Health, and 4) the National Library of Medicine.

87 The National Transportation Safety Board (NTSB) investigates every civil aviation accident in the United States and significant accidents in the other modes of transportation, conducts special investigations and safety studies, and issues safety recommendations to prevent future accidents. Preventing accidents with the consequent reduction in death, injuries, and property damage is the primary focus of NTSB 's work. The NTSB does not accomplish transit safety improvements alone. However, because the Board deals with real-world accidents and their causes, it has a responsibility to be the catalyst to motivate these other organizations to improve safety. The other transportation modalities participating are aviation, rail, highway, boating and coastal, pipeline, and hazardous material handling. The NHII needs to provide a clear channel of communication between NTSB and all collaborating agencies in the fields identified above.

88 The U.S. Consumer Product Safety Commission (CPSC) was created in 1972 by Congress in the Consumer Product Safety Act. In that law, Congress directed the Commission to "protect the public against unreasonable risks of injuries and deaths associated with consumer products." CPSC needs to be a participant in the NHII because the agency works to reduce the risk of injuries and deaths from consumer products by informing and educating consumers through the media, state and local governments, private organizations, and by responding to consumer inquiries. CPSC has jurisdiction over about 15,000 types of consumer products, from automatic-drip coffee makers to toys to lawn mowers. Some types of products, however, are covered by other federal agencies. For example, cars, trucks and motorcycles are covered by the Department of Transportation; foods, drugs and cosmetics are covered by the Food and Drug Administration; and alcohol, tobacco and firearms are within the jurisdiction of the Department of the Treasury.

89 The chemsafety.gov Web-site is sponsored by the Chemical Safety Board. Easy navigation and frequent updates are the highlights of this site which aims to decrease chemical accidents through investigation and education. With less than 30 employees, the Chemical Safety Board proves that even the small offices can have a big Web presence.

90 The Bureau of Alcohol, Tobacco and Firearms (BATF) is a law enforcement organization within the United States Department of Treasury with unique responsibilities dedicated to reducing violent crime, collecting revenue, and protecting the public. BATF enforces the federal laws and regulations relating to alcohol, tobacco, firearms, explosives and arson by working directly and in cooperation with others

91 Under section 18 of the Occupational Safety and Health Act, states may elect to administer their own occupational safety and health programs, or State Plans, which must be approved and monitored by federal OSHA. OSHA does not delegate authority to the states but rather removes the bar of preemption through State Plan approval. OSHA exercises no enforcement authority in these states except in limited areas, such as providing safety and health coverage for federal agencies, maritime facilities, and military bases. Thus, in states that administer their own programs, the State Plan agency is the authority responsible for occupational safety and health enforcement, and other federal and state government agencies work with the State Plan agency in the same manner as they do with federal OSHA. Requirements for developing the environmental aspects of the NHII need to be specified within each State Plan.

92 An example of this synergy is the Agricultural Health Study, a cooperative agreement between NIEHS and the National Cancer Institute. It was developed to identify which agricultural compounds pose a cancer risk to farmers. NIEHS recognized the benefit to providing extra funds to expand the scope of this study to include non-cancer risks as well as including the families of the farmers and pesticide applicators using these chemicals.

93Among the other cooperative projects described in this report are partnerships with the following:

    • Environmental Protection Agency to create a national network of programs on Children's Environmental Health and Disease Prevention Research
    • Department of Housing and Urban Development to survey American households for allergy-inducing (i.e., allergens) substances in their homes
    • Centers for Disease Control and Prevention to assess the levels of common endocrine-disrupting compounds to which the American public is exposed;
    • Food and Drug Administration to develop a Phototoxicity Center various products increase sensitivity to sunlight;
    • Pharmaceutical Industry to develop surrogate markers for safety.

    94 The human health/disease condition is determined by the complex interplay between genetic susceptibility, environmental exposures, and aging. The ultimate aim of the Environmental Genome Project is to understand the impact and interaction of environmental exposures on human disease. Understanding genetic susceptibility to environmental agents will allow more precise identification of the environmental agents that cause disease and the true risks of exposures. This can lead to more effective disease prevention and improved public health.

    95 As a part of this effort, NIEHS Center defines the community and/or region that it serves and develops productive outreach efforts that are specifically designed to address environmental health issues and problems of greatest concern to that community. It is particularly important to deal with such issues when they arise in a population that may be more susceptible to environmental insults, e.g. children, elderly, or socio-economically disadvantaged communities. NIEHS Centers are encouraged to sponsor local efforts through community organizations and to collaborate with other existing outreach programs in their area e.g., those supported by other NIH institutes, other federal agencies, and state or local agencies or health departments.

    96 The Clean Air Act (CAA) establishes policy and general procedures for cooperation and coordination between the EPA and the CSB to minimize duplication of activities.

    97 OSHA is the federal agency with primary responsibility for worker safety and health. OSHA is authorized by the OSH Act, 29 USC. section 651 et seq., to promulgate and enforce mandatory safety and health standards for the purpose of assuring, so far as possible, safe and healthful working conditions for every worker in the United States. OSHA and the CSB have entered into an MOU that establishes policy and general procedures for cooperation and coordination between the two agencies and minimizes duplication of activities so that each agency may carry out its specific statutory requirements in an efficient and effective manner.

    98 Collaboration and cooperation between the Agency for Toxic Substances and Disease Registry (ATSDR) and the Chemical Safety and Hazard Investigation Board (CSB) has enhanced through a Memorandum of Understanding between the two agencies. The agreement ensures that the CSB can tap into a wealth of public health expertise as it investigates chemical incidents. Because of the MOU with the Chemical Safety Board, ATSDR public health experts not only can respond to and track chemical incidents. They can also help prevent them.

    99 The problem with environmental reporting is the absence of any real environmental reporting "system." Rather, there is a collection of independently defined and managed reporting processes designed to document compliance with individual regulations and track program implementation. As a result, integration of source reports across program lines is difficult or impossible. Inefficiency and duplication are inevitable, although each individual reporting process might be efficient.

    100 As of September 20, 2000, 52 of the 55 states and territories are members of ECOS. ECOS has compiled information about all the state environmental organizations. The database can be queried for information on a state-by-state basis. Information can also be viewed by the Environmental Act that it relates to.

    101 Through this partnership, the States and EPA are working to improve the collection, management, and sharing of environmental information in support of environmental goals and priorities. States and EPA are also working to reduce their costs and burden by sharing investments in technology and developing a common set of useful and usable environmental information.

    EPA and ECOS collaborate in the following content areas:

    Air, Enforcement and Compliance, Pesticides, Solid Waste and Emergency Response, Toxic Substances, Water and Cross-Media

    102 Examples include traditional and desktop print media, broadcast media announcements, such as PSAs, broadcast media interviews such as press conferences and talk shows, electronic media such as the Internet or by access to an environmental database, personal communication such as by telephone (often in response to inquiry from media or elected officials), and in-person presentations.

    03 Examples of presentation settings include: community meetings, regulatory and non-regulatory, legislative briefings or hearings, instructional sessions, and scientific meetings.

    04 The purposes of presenting the findings from health surveillance data are varied. Reports and alerts should be designed with a specific purpose in mind, and the communication format chosen may differ accordingly. Typical purposes are: to warn (a standard duty of the public health agency), to generate a response i.e., motivate to action, such as to promote involvement, to inform (impart knowledge, increase awareness) and to teach i.e., a skill, and to influence the policy and decision-making process. An additional purpose for some reports is to satisfy mandated reporting requirements which often accompany external funding.

    05 An example is the Health Communication Research Laboratory at the Saint Louis University School of Public Health that develops and tests printed materials and computer-based programs for health promotion and disease prevention. The HCRL mission is to enhance the health of individuals and populations through research, development, and dissemination of innovative and effective health communication programs. They believe well-designed, theory-based health communication plays an important role in informing, motivating, and enabling people to take steps to improve their health.

    06 The interim report argues convincingly that new tools such as automated reminders and decision-support systems will encourage patient adherence to treatment and health maintenance plans and improve the quality of care.

    07 Tailoring is a process of creating individualized communication. It is an assessment-based approach in which individuals provide personal data related to a given health outcome. Those data are then used to determine the most appropriate information or strategies to meet each person's unique needs. The development of tailoring and other computer-based programs will not be limited by technology or the availability of technicians but rather by the ability to develop high quality, interesting, and effective content and programming. Traditional mass communication channels such as television and print media will evolve into "micro-mass" channels, creating opportunities for mass customization of health programs to specific risk factors, interests, and concerns of individual users.

    08 Tailored communication will become increasingly effective as we learn more about how individuals process health information. Present tailoring research is an early step toward harnessing the power of more interactive, vivid, and engaging media formats. New technologies, new approaches to tailoring, and new strategies for information delivery will bring expanded opportunities. Expansion of tailoring into new settings will provide access and benefits to more diverse populations.

    09 In a similar assessment, the NCVHS interim report 2000 states that technology is not the major barrier to making the envisioned future a reality. Most of the barriers to an effective and beneficial national health information infrastructure are legal, societal, organizational, and cultural in nature. NCVHS identifies the following barriers:

    • The need for improved privacy protections.
    • Lack of a societal consensus about information as both a private resource and public good.
    • Insufficient standards for information guardians, interoperability, and common vocabularies.
    • Inadequate quality standards for online information.
    • The need for improved security and high performance technology.
    • A need for a stronger, diversified, partnership approach to costs of development.
    • Inappropriate attitudes and practices of individuals, providers and public health professionals and their failure to adopt needed tools.
    • Insufficient equity to assure that the full potential of the NHII will be shared equally by all.

    10 The SciPICH report concludes the following: "Public access points need to be selected with a thorough understanding of the target audience and will depend on the type of application and the relationship between intended users and the setting. For instance, many under-served populations harbor a distrust of certain institutions that might otherwise be appropriate candidates for delivering Interactive Health Communication (IHC) applications. If government-sponsored sites, such as clinics and public buildings, are not trusted by these populations, alternate settings such as community centers and places of worship may need to be considered."

    11 Social factors in health status include occupation, place in the social hierarchy, and educaction.

    12 healthfinder® search results for tobacco yield 52 Web resources such as the "It's Easier Not To Start, Than It Is To Stop" public service announcement, the Behavioral Risk Factors Page from the Centers for Disease Control and Prevention, and a Boyz II Men Interview. 21 organization concerned with smoking prevention and cessation are also linked to the healthfinder® site.

    13healthfinder® search results for physical activity yield 60 Web resources such as the "Fitness Basics, Fitness Facts for Older Americans" and "Fitness for a Healthy Heart. " 31 organizations concerned with physical activity are also linked to the healthfinder® site.

    14healthfinder® search results for nutrition yield 103 Web resources such as the "Nutrition and Your Health: Dietary Guidelines for Americans (2000) " and "A Food Labeling Guide. " Over 60 organization concerned with nutrition are also linked to the healthfinder® site. One such link is to the National Center for Health Statistics (NCHS), part of the Centers for Disease Control and Prevention, USPHS. This agency conducts the National Health and Nutrition Examination Survey (NHANES). This survey has been designed to collect information about the health and diet of people in the United States. NHANES is unique in that it combines a home interview with health tests which are done in a Mobile Examination Center.

    15healthfinder®'s has 29 Web resources relating to health and sex. They include: "Tips for Parents to Help Their Children Avoid Teen Pregnancy, " "Sexual Orientation and Homosexuality, "and the "Age Page - Sexuality in Later Life. " There are ten organizations linked to healthfinder® that deal with sexual health issues.

    16 A resource to address the alcohol and substance abuse problem is http://www.health.org/about/aboutncadi.htm

    the National Clearinghouse for Alcohol and Drug Information (NCADI). It is the information service of the Center for Substance Abuse Prevention (CSAP) of the Substance Abuse and Mental Health Services Administration (SAMHSA) in the U.S. Department of Health & Human Services. NCADI distributes products from various agencies, such as the U.S. Departments of Education and Labor, the Center for Substance Abuse Prevention, the Center for Substance Abuse Treatment, the National Institute on Alcohol Abuse and Alcoholism, and the National Institute on Drug Abuse. In its library is a collection of culturally-diverse prevention, intervention, and treatment resources tailored for use by parents, teachers, youth, communities and prevention/treatment professionals. NCADI's Prevention Materials database (PMD) has over 8,000 prevention-related materials. The PMD and the Treatment Resources Databases are available to the public in electronic form. NCADI enables SAHMSA to rapidly dissemination of federal grant announcements for prevention, treatment, and research funding opportunities.

    17 Among its many functions, OSH develops and distributes the annual Surgeon General's report on smoking and health, coordinates a national public information and education program on tobacco use and health, and coordinates tobacco education and research efforts within the Department of Health and Human Services (DHHS) and throughout the governments both federal and state.

    18 The site is dedicated to the memory of Jonathan Mann MD, MPH (1947-1998)

    "There is a crisis of identity in public health. To ensure conditions in which people can be healthy we must work to change the underlying societal conditions. Public health has rarely been able to go beyond pointing at these larger issues, such as poverty, economic globalization, and lack of political will." (Jonathan Mann 1997)

    19 The Office of Disease Prevention and Health Promotion (ODPHP) stimulates and coordinates efforts to promote a health oriented culture in the workplace. The National Institute for Occupational Safety and Health (NIOSH) / CDC conducts research, makes recommendations and disseminates information on preventing workplace disease, injury and disability.

    20 The National Ag Safety Database (NASD), sponsored by the National Institute for Occupational Safety and Health, contains over 2,500 agriculture health and safety publication including scientific publications, lists of involved organizations, and safety related videos.

    21 The government's activity is integrated with and augmented by private sector organizations. For example, the Electronic Library of Construction Safety and Health (ELCOSH) was created by the Center to Protect Workers' Rights, the research arm of the Building and Construction Trades Department of the AFL-CIO. ELCOSH make it easier to obtain useful information. A grant from the CDC made this possible.

    22 The University of California at Irvine Health Promotion Center has research and educational activities guided by social and ecological perspectives. For example, they are concerned with, among other things, ergonomic workplace design, industrial hygiene, and a holistic approach to work site wellness.

    123 In terms of community safety needs, the multidisciplinary Injury Prevention Web contains injury data for every state and links to many government and non-profit organizations involved in public safety issues. Its focus is on pedestrian and bicycle safety, injury prevention legislation, safety codes, standards, disaster planning and response.

    24 Historically, most environmental public health surveillance (EPHS) systems produce a standard report which includes data analysis, interpretation, and conclusions.

    25 Other forms of data release include succinct alerts, fact sheets for the general public and populations at elevated risk, summaries for policy makers, expanded reports for prevention program managers and researchers, and scientific reports for publication in public health journals.

    26 The reporting capabilities available today are dynamic and interactive allowing data users with a Web browser and supporting software to query the EHPS data base and extract and format their own customized reports. This approach was pioneered by Office of Health Data Analysis Utah Department of Health.

    27 The Indoor Environment Department of the Lawrence Berkeley Laboratory of the Department of Energy conducts a broad program of research, technology development and dissemination activities directed toward improving the health of the indoor environment. Their work focuses on improving indoor air quality (IAQ, the health and productivity of building occupants, and understanding human exposures to environmental pollutants found in indoor and outdoor air.

    28 AT&T's engagement as a partner with the EPA in an innovative self-assessment program, has led to the development of the most frequently visited Website in the fields of environmental health and occupational safety. AT&T has added a new analytical framework to the field by popularizing the concept of industrial ecology. "We welcomed this partnership with the EPA," said Paul Shorb, an attorney with AT&T. The EPA seemed to understand the challenges we face in an industry moving at Internet speed. This program gave us the opportunity to step back, look at how we are doing things, and put in place improvements to make sure we're always the best corporate citizens we can be."

    29 Using information from scientific sources and regulatory agencies, Scorecard provides listings of the chemicals that can cause cancer, harm the immune system, contribute to birth defects, or lead to any of nine other types of health impacts. Chemicals whose health hazards are widely recognized by authoritative scientific organizations are separated from chemicals whose health hazards are suspected on the basis of more limited data. Lists are available for twelve different types of adverse health effects.

    30 A growing body of scientific knowledge demonstrates that children may suffer disproportionately from environmental health risks and safety risks. These risks arise because 1) children's neurological, immunological, digestive, and other bodily systems are still developing, 2) children eat more food, drink more fluids, and breathe more air in proportion to their body weight than adults, 3) children's size and weight may diminish their protection from standard safety features, and 4) children's behavior patterns may make them more susceptible to accidents because they are less able to protect themselves.

    31 This program is committed to promoting the development and maintenance of state and community-based computerized registries that capture immunization information on all children. CDC identified Minimum Functional Standards for immunization registries that electronically store, process, and retrieve data on all National Vaccine Advisory Committee approved core data elements.

    32 By establishing a record within 6 weeks of birth for each newborn child born in their catchment area an Immunization Registry can provide access to information at the time of clinical encounters. This allows healthcare worker to (1) determine the immunization(s) needed when patients are being seen, (2) enable the production of reminder/recall notifications, (3) produce immunization coverage reports by providers, age groups, and geographic areas, and (4) accurately consolidate all immunization records from multiple providers. All this is accomplished by registries in a secure, authorized manner.

    33 The Leading Health Indicators serve as a link to the 467 objectives in Healthy People 2010 and can become the basic building blocks for community health initiatives. The Leading Health Indicators are intended to help everyone more easily understand the importance of health promotion and disease prevention and to encourage wide participation in improving health in the next decade. Developing strategies and action plans to address one or more of these indicators can have a profound effect on increasing the quality of life and the years of healthy life and on eliminating health disparities—creating healthy people in healthy communities.

    34 The Federal Geographic Data Committee (FGDC) is an interagency committee, organized in 1990 under OMB Circular A-16 that promotes the coordinated use, sharing, and dissemination of geo-spatial data on a national basis. The FGDC is composed of representatives from seventeen Cabinet level and independent federal agencies. The FGDC coordinates the development of the National Spatial Data Infrastructure (NSDI). The NSDI encompasses policies, standards, and procedures for organizations to cooperatively produce and share geographic data. The 17 federal agencies that make up the FGDC are developing the NSDI in cooperation with organizations from state, local and tribal governments, the academic community, and the private sector.

    35 The "Quality of Life Model" is explained in the text and also depicted graphically. This shows how the psychosocial model of care and the medical model of care can be designed to converge on the goal which is "Quality of Life". See pg. 112-113.

    36 An example of the interest health collaborations have generated is shown by the activities of the New York Academy of Medicine's Center for the Advancement of Collaborative Strategies in Health. The Center provides technical assistance to communities to improve their ability to implement health-promoting partnerships. Successful examples of partnerships that have contributed to mainstream well being are the Healthy Communities and Turning Point initiatives. Partnerships of this nature are hard to maintain and, therefore, there is a high attrition. For those that hold together, they find it difficult to document their success.

    37 The following organizations are just a few that are indicative of the types of participants needed in each area.

    Professional Associations:

      • National Association for Public Health Statistics and Information Systems,
      • Association for Health Services Research,
      • National Association of Health Data Organizations,
      • Council of State and Territorial Epidemiologists

      Industry

        • Information technology/informatics industries
        • health industry
        • media

        Advocacy groups

          • American Association of Retired Persons,
          • the National Alliance for the Mentally Ill
          • food safety and environmental organizations
          • privacy advocates