Report and Recommendations
From the National Committee on Vital and Health Statistics
Washington, D. C.
Members of the National Committee on Vital and Health Statistics
John R. Lumpkin, M.D., M.P.H.
Illinois Department of Public Health
Jeffrey S. Blair, M. B. A.
Medical Records Institute
Albuquerque, New Mexico
Simon P. Cohn, M. D., M. P. H., FACP
National Director for Health Information Policy
Kaiser Permanente Medical Care Program
Kathryn L. Coltin, M. P. H.
External Quality and Data Initiatives
Harvard Pilgrim Health Care
John W. Danaher, M. D.
Daniel J. Friedman, Ph. D.
Bureau of Health Statistics, Research and Evaluation
Massachusetts Department of Public Health
Richard K. Harding, M. D. Professor of Clinical Psychiatry and Pediatrics
Vice Chairman, Clinical Services
Neuropsychiatry & Behavioral Science
University of South Carolina
Columbia, South Carolina
Eugene J. Lengerich, V. M. D.
Penn State University
Vickie M. Mays, Ph. D.
Department of Psychology
University of California, Los Angeles
Los Angeles, California
Clement Joseph McDonald, M. D.
Distinguished Professor of Medicine
Indiana University School of Medicine
Paul Newacheck, Dr. P. H.
Professor of Health Policy and Pediatrics
Institute of Health Policy Studies
School of Medicine
University of California at San Francisco
San Francisco, California
Mark A. Rothstein, J. D.
Herbert F. Boehl Chair of Law and Medicine
Director, Institute for Bioethics, Health Policy and Law
University of Louisville School of Medicine
Edward H. Shortliffe, Ph. D., M. D.
Department of Medical Informatics
New York, New York
Barbara Starfield, M. D., M. P. H.
Distinguished University Professor and Professor of Health Policy and Pediatrics
School of Hygiene/ Public Health
The Johns Hopkins University
Kepa Zubeldia, M. D.
The Honorable Tommy G. Thompson
U. S. Department of Health and Human Services
200 Independence Avenue, S. W.
Washington, D. C. 20201
Dear Secretary Thompson:
On behalf of the National Committee on Vital and Health Statistics (NCVHS), I am pleased to submit the report of the NCVHS Workgroup on the National Health Information Infrastructure (NHII), which was approved by the full Committee at its November 15, 2001, meeting. Information for Health: A Strategy for Building the National Health Information Infrastructure builds on the Workgroup's Interim Report of June 2000 and is the culmination of an 18-month review that included hearings and consultations with healthcare providers, public health professionals, consumer representatives, and healthcare information technology representatives.
Recent events make this report both timely and urgent. They have dramatically underscored the importance of an effective, comprehensive health information infrastructure that links all health decisionmakers, including the public. Based on public hearings about the NHII, the Committee has determined that Federal leadership, under the U. S. Department of Health and Human Services (HHS), is the most important missing ingredient that could accelerate and coordinate progress on the NHII. Its recommendations therefore include specific proposals for HHS oversight and coordination, supportive action by Congress, and appropriate efforts by other organizations. The latter include State and local governments, healthcare providers, health plans and purchasers, standards development organizations, the information technology industry, consumer advocacy groups, community organizations, and academic and research organizations.
NCVHS urges HHS to exercise leadership in building the National Health Information Infrastructure and to give it the priority it deserves, in collaboration with the many stakeholders whose participation will be crucial for success. The Committee would welcome annual status reports from the Department on this project, beginning in 2002.
Finally, the Committee offers its advice and enthusiastic support for all efforts aimed at developing the NHII.
John R. Lumpkin, M. D., M. P. H.
Chair, National Committee on Vital and
Recent events have tragically underscored the need to connect healthcare and public health professionals and the public to sound information — and to each other. The National Committee on Vital and Health Statistics (NCVHS) hopes this report can prompt the vigorous strategic action that is required to make this vision a reality. Information for Health: A Strategy for Building the National Health Information Infrastructure offers a comprehensive assessment of the leadership required to improve the health of individuals, communities, and the Nation by better use of information and communication technology. Some of what needs to be done is already happening or is envisioned. But too many efforts are proprietary, stovepiped, or incomplete. Very little is coordinated in ways that can best serve the public interest. This report from the NCVHS Workgroup on the National Health Information Infrastructure pulls the diverse issues into a broader policy framework. Based on input from national hearings, experts, and stakeholder organizations, the Committee calls for Federal leadership, under the U. S. Department of Health and Human Services, of a collaborative public-private effort. It is a task that should engage all who have a stake in health improvement.
John R. Lumpkin, M. D., M. P. H.
Chair, National Committee on Vital and Health Statistics
The Workgroup on the National Health Information Infrastructure (NHII) wishes to thank its colleagues on the National Committee on Vital and Health Statistics (NCVHS) for their many contributions to this report. The report — and indeed, the Workgroup itself — was initiated by the former NCVHS Chair, Don Detmer, at a time when few people championed linkages between the healthcare sector, public health, and the public. Under the subsequent leadership of John Lumpkin, as Chair of both the NCVHS and the Workgroup, the NHII vision was developed and the strategic leadership requirements were defined. The Workgroup is grateful to the experts and organizations whose invaluable suggestions shaped the report's recommendations. Development of the report was coordinated by the Office of Disease Prevention and Health Promotion of the U. S. Department of Health and Human Services (HHS), which staffed the Workgroup. The HHS National Center for Health Statistics, Centers for Disease Control and Prevention, serves as Executive Secretary to the Committee and provides logistical and staff support. The Office of the Assistant Secretary for Planning and Evaluation serves as Executive Staff Director of the Committee and coordinates departmental staffing.
Staffing and Support
NCVHS Workgroup on the National Health Information Infrastructure
John R. Lumpkin, M. D., M. P. H., Chair
Jeffrey S. Blair, M. B. A.
Daniel Friedman, Ph. D.
Richard K. Harding, M. D.
Clement Joseph McDonald, M. D.
Edward H. Shortliffe, M. D., Ph. D.
Barbara Starfield, M. D., M. P. H.
Kepa Zubeldia, M. D.
Office of Disease Prevention and Health Promotion (HHS)
Mary Jo Deering, Ph. D., Deputy Director for eHealth and Management,
NHII Lead Staff and Project Manager and Writer for the Interim and
Cynthia Baur, Ph. D., Senior eHealth Advisor, NHII Writer
Wayne Brandes, D. O., M. P. H., Preventive Medicine Resident and NHII Writer (Fall 1999)
Leslie D. Hsu, M. P. H., Consumer Health Informatics Advisor, NHII Web Manager and NHII Writer
National Center for Health Statistics (CDC)
Edward J. Sondik, Ph. D., Director
Marjorie Greenberg, Chief, Data Policy and Standards Staff, NCVHS Executive Secretary
Debbie Jackson, Senior Program Analyst
Michelle Williamson, Health Informatics Specialist
Public Health Practice Program Office (CDC)
Steven J. Steindel, Ph. D., Supervisory Health Scientist, NHII Staff and NHII Writer
Centers for Medicare & Medicaid Services
Theresa Krol, NHII Staff
The NHII Workgroup and its staff wish to gratefully acknowledge the many outstanding contributions of Susan Baird Kanaan, Consultant Writer.
Human endeavor is caught in an eternal tension between
the effectiveness of small groups acting independently
and the need to mesh with the wider community.1
We as a Nation have a timely opportunity and an urgent need to build a 21st-century health support system — a comprehensive, knowledge-based system capable of providing information to all who need it to make sound decisions about health. Such a system can help realize the public interest related to disease prevention, health promotion, and population health.
This report from the National Committee on Vital and Health Statistics (NCVHS), a public advisory committee statutorily authorized to advise the Secretary of Health and Human Services on national health information policy, outlines a vision and a process for building such a health support system — the National Health Information Infrastructure (NHII).
The NHII includes not just technologies but, more importantly, values, practices, relationships, laws, standards, systems, and applications that support all facets of individual health, health care, and public health. It encompasses tools such as clinical practice guidelines, educational resources for the public and health professionals, geographic information systems, health statistics at all levels of government, and many forms of communication among users.
The report identifies the human, institutional, and technological factors — existing and as yet undeveloped — that must be involved in building the NHII. The Committee recommends a strategy that gives the U. S. Department of Health and Human Services a key leadership role at the center of a broadly collaborative process for the public and private sectors. In addition to offering a detailed implementation plan, the recommendations in the report are unique in that they are comprehensive; they stress the need for information flows across sectors and with the public; and they attach equal importance to the personal health, healthcare provider, and population health dimensions.
The heart of the vision for the NHII is sharing information and knowledge appropriately so it is available to people when they need it to make the best possible health decisions. To meet the Nation's health needs, the NHII must serve all individuals and communities equitably. The interconnections made possible by the NHII would allow information capacities that now exist or are developing in the health field to be put to fuller use. Ready access to relevant, reliable information and secure modes of communication would enable consumers, patients, healthcare and public health professionals, public agencies, and others to address personal and community health concerns far more effectively.
The NHII would serve important national interests. The Committee believes that implementation of the NHII will have a dramatic impact on the effectiveness, efficiency, and overall quality of health and health care in the United States. Serious problems such as public health emergencies, medical errors, and health disparities could be addressed in a more timely and comprehensive fashion.
Avoiding unnecessary care, cost, and anxiety: Mr. S. flies across the country to start a new job. He has already chosen a medical practice in his new town because it has the same online health support service as his previous doctor, even though it is a different medical plan. He can set up appointments, get prescription refills and lab results, e-mail the doctor or nurses, and manage his personal health history. A week after he arrives, he develops fever and muscle aches. Fearing that he may have anthrax or smallpox, he e-mails his new doctor a list of his symptoms, along with his itinerary over the previous 14 days. The doctor's automatic system immediately matches his itinerary against the public health database of anthrax and smallpox occurrences and runs his symptoms against his own personal health record, including his medications. It sends an urgent alert to the doctor, who sees no likely source of exposure for Mr. S. but spots a potential drug-drug interaction. She calls him and tells him that the new drug he just started could have caused an adverse reaction. She feels confident that he does not need to come in for tests or take unnecessary antibiotics. Instead, she changes his medication and asks him to e-mail her in 24 hours. The next day, his e-mail message confirms that his fever and aches are gone. Unnecessary lab tests, investigation by public health authorities, anxiety for Mr. S. and his family, and an unneeded antibiotic are all avoided. This "non-event" is the happiest of all endings for Mr. S., his doctor, and the health of the public.
THREE DIMENSIONS: PERSONAL HEALTH, HEALTHCARE PROVIDER, AND POPULATION HEALTH
The key NHII stakeholders and health information users are consumers, healthcare providers (both individuals and organizations), and public health professionals at local, State, and national levels. The applications that meet their respective needs are distinct dimensions of the infrastructure that the Committee calls, respectively, the personal health dimension, the healthcare provider dimension, and the population health dimension. These dimensions provide a means for conceptualizing the capture, storage, communication, processing, and presentation of information for each group of information users.
- The personal health dimension supports individuals in managing their own wellness and healthcare decisionmaking. It includes a personal health record that is created and controlled by the individual or family, plus nonclinical information such as self-care trackers and directories of healthcare and public health service providers.
- The healthcare provider dimension promotes quality patient care by providing access to more complete and accurate patient data on the spot, around the clock. It encompasses such information as provider notes, clinical orders, decision-support programs, digital prescribing programs, and practice guidelines.
- The population health dimension includes information on both the health of the population and the influences on it. The population health dimension makes it possible for public health officials and other data users at local, State, and national levels to identify and track health threats, assess population health, create and monitor programs and services including health education campaigns, and conduct research.
The dimensions overlap considerably. Indeed, the greatest value derives from shared information and communication across them. The interests and activities of many other important stakeholders, such as health plans and public health agencies, fall squarely in two or more dimensions.
The evolution of the NHII is already under way, but so far progress toward a fully realized NHII has been slow. Although many of the basic components for the NHII already exist and are operating in their own spheres, they lack the interconnections that could make them more useful in concert than they are as isolated pieces. Many nonhealth-specific communication technologies are already available, affordable, and widely used in multiple sectors of U. S. society. For the most part, however, their full potential is not realized because they are proprietary, incomplete, or uncoordinated. Also, many existing programs and activities in the public and private sectors provide a foundation for the NHII, but they are fragmented and dispersed throughout agencies and organizations that lack a mechanism for coordination. Their impact would be enhanced if they were part of a comprehensive NHII framework.
FEDERAL LEADERSHIP AS THE CORNERSTONE OF IMPLEMENTATION
Based on public hearings about the NHII vision, NCVHS has determined that the most important missing ingredient, which could accelerate and coordinate progress on the NHII, is leadership, specifically, Federal leadership. Public-and private-sector representatives testified that the lack of a strong Federal presence to guide the development of the NHII is a major gap. They urged immediate Federal leadership to bring about collaboration between stakeholders in the private and public sectors and among all levels of government. NCVHS has heard the message and responded with a set of recommendations that outlines the leadership needs and responsibilities to bring the NHII into being.
Consequently, the Committee recommends that a new senior position and office at the U. S. Department of Health and Human Services (equipped with adequate funding) be developed to oversee and coordinate a broad range of health information policy, research, and program activities in different sectors, both public and private.
This office should have the resources and mandate to coordinate all efforts for the NHII, internally and externally and in both public and private sectors, and to directly fund strategic crosscutting activities. The new office should exercise both horizontal and vertical coordination: horizontally, across healthcare providers, consumers, public health programs, standards development organizations, payers, government agencies, academic and healthcare institutions, and others, and vertically, through local, State, and national entities. It must explicitly encompass the personal health, healthcare provider, and population health dimensions rather than focus on any single area. At the same time, the NHII-related activities of each HHS agency need to be strengthened and new resources added under the general coordination of the new office.
The Federal Government has a key role to play in these developments, but it cannot do so alone. A dynamic, nationwide, collaborative venture is needed for this purpose. Besides needing strong Federal leadership, the developmental process must engage a broad range of stakeholders. As things stand now, some groups have been working hard to envision and stimulate the NHII, while many other stakeholders either have not yet recognized its potential benefits or lack the resources to participate in its development. One of the chief reasons that NCVHS recommends focused Federal leadership as the NHII evolves is that without such leadership, the multitude of existing and new activities are far likelier to work at cross-purposes than to be additive and complementary.
The National Committee's 27 recommendations (which begin on page 39) spell out NHII-building activities for 9 categories of stakeholders whose roles are often parallel and always interdependent. The categories are
- The Federal Government, including the U. S. Department of Health and Human Services, Congress, and Federal health data agencies
- State and local governments, including State and local health and data agencies
- Healthcare providers, including membership and trade organizations and healthcare organizations
- Health plans and purchasers
- Standards development organizations
- The information technology industry
- Consumer and patient advocacy groups
- Community organizations
- Academic and research organizations
The Committee identifies strategic legislation and funding needed to support the NHII. It recommends that Federal, State, and local agencies and healthcare organizations strengthen their own leadership and coordination for NHII-related activities. It calls for accelerated standards development and other steps to promote information flows among the dimensions. It identifies key opportunities for specific stakeholders, including consumer groups, to advance the NHII within their own areas and in collaboration with others.
The Committee envisions three major stages in the process. NCVHS suggests that stage one be completed within 2 years, stage two within 5 years, and stage three within 10 years.
- The first stage has five major tasks: creating the recommended senior position and lead office within HHS with sufficient authority and funds and building relationships with centers of leadership in HHS and other agencies; fleshing out the vision as a national health information policy and implementation plan; establishing incentives and requirements; launching a comprehensive standards acceleration process; and committing the resources implicit in each of these tasks.
- The second stage centers on developing and expanding collaboration at national, State, and local levels and with the private sector to complete and confirm the implementation plan. This stage will involve the most extensive and substantive forms of collaboration.
- The third stage involves carrying out the implementation plan in all relevant areas of the private sector and all levels and areas of government.
Recent events underscore that an effective NHII is not a luxury but a necessity; it is not a threat to our privacy but a vital set of resources for preventing and addressing personal and collective health threats. Better safeguards for privacy, confidentiality, and security are hallmarks of the NHII. The NHII is not intended to create a Federal database of personal health records or a centralized healthcare system. Instead, it will give users access — when it is appropriate, authorized by law or patient approval, and protected by security policies and mechanisms — to a diverse array of information, stored in locations that include providers' offices, organizational and governmental Web sites, and population health databases.
We as a Nation have a timely opportunity and an urgent need to build a 21st-century health support system — a comprehensive, knowledge-based system capable of providing information to all who need it to make sound decisions about health. Such a system can help realize the public interest related to disease prevention, health promotion, and population health.
Consumers, healthcare providers, public health professionals, employers, policymakers, and others recognize that ready access to relevant, reliable information would greatly improve everyone's ability to address personal and community health concerns. 2,3 Medical errors and adverse effects have been documented to be severe problems for which information is a crucial part of the solution. 4,5 Public health professionals know from experience that timely and complete information on abnormal patterns of disease and other public health threats would help them save lives in their communities. Health emergencies, whether personal, local, or national, all require that prompt and authoritative information about the situation, its consequences, and any victim(s) be readily available to those involved. The national goal of eliminating significant health disparities associated with income, race, and ethnicity also cannot be achieved without better information about the distribution of health inequities and effective interventions to address them.3
This report from the National Committee on Vital and Health Statistics (NCVHS) outlines a vision and a process for mobilizing the human, institutional, and technological factors needed to support health decisionmaking through a National Health Information Infrastructure (NHII). NCVHS, a public advisory committee, is statutorily authorized to advise the Secretary of Health and Human Services (HHS) on national health information policy. It reports annually to Congress on progress toward privacy protection and administrative simplification. The events following September 11, 2001, are irrefutable evidence of the need to be alert to health information from all sources, as soon as it emerges. These events only strengthen the Committee's belief that the United States urgently needs a comprehensive NHII that the country is clearly capable of building.
Managing diabetic Medicare patients: A senior Federal health official is being briefed about plans for Medicare's pilot project, "IDEATel" — Informatics for Diabetes Education and Telemedicine. IDEATel serves Medicare patients who live in rural areas and inner cities and who tend to use costly emergency room visits because they lack regular local providers or access to specialists. The system links these underserved people to providers in distant locations; it offers home testing, Web-based input into the electronic medical record by both the provider and the patient, automated alerts to the case manager, secure clinical e-mail, and customized information on diet, medications, and exercise. The patients monitor their own conditions and send information to their case managers. The official learns that complications from diabetes cost the U. S. economy $45 billion each year, with an additional $47 billion due to the indirect costs of diabetes-related disabilities. Early intervention can reduce suffering and improve care; it also can save money. By giving patients, their case managers, and their healthcare providers tools to better manage diabetes, the Government may be able to save $247 million each year. It is estimated that the savings could reach $457 million if such a system could be widely extended.
More than problem solving is at stake. Testimony in regional hearings showed a consensus that implementation of the NHII will have a dramatic impact on the effectiveness, efficiency, and overall quality of health care and public health in the United States. (See Table 1.) Making the interconnections envisioned for the NHII will allow many information capacities that now exist (or are developing in the health field) to be put to fuller use, producing widespread benefits for the health and quality of life of all Americans. In the public health arena, the disease registries that track trends in serious diseases, public health alert systems that permit rapid response to emergencies, and tracking of the national objectives for Healthy People 2010 could more effectively prevent disease and promote health at national, State, and local levels if these capacities were part of an integrated nationwide system. Consumers and patients could pursue their demonstrated interest in managing their health and working in partnership with their healthcare providers if they were linked securely to online health services and information tailored to their needs. The health information contained in medical records could be much more meaningful if it were available electronically to healthcare providers and patients when needed for managing health and medical care. Clinicians also need a systematic way to increase their capacity to access and synthesize the volume of health information and knowledge that is part of contemporary medical practice and to receive expert advice and decision support on demand.
If these and other capacities could be harnessed and coordinated within an NHII, national resources could be freed up over the long term for priorities such as expanded prevention efforts and the extension of health care to underserved groups. Connections such as these are critical in today's fragmented healthcare system.
The Nation's growing information and communication capabilities already facilitate some information flow to and communication among health decisionmakers. But the health sector is lagging far behind others (banking and entertainment, for example) in adapting and using information technology for its own purposes. 6 Use of information technology in the health sector has been evolving, but randomly and without a plan. Much more would be possible if all the capacities could grow in a coordinated way, guided by a comprehensive vision.
Table 1 — NHII Contributions to Healthcare System Improvements
Quality of Care
Several authoritative bodies (some of whose work is cited in Section 3) have given detailed descriptions of the potential of a national health information infrastructure and offered recommendations, especially on technical matters. Their contributions provide a solid foundation for this report and its recommendations, which take the next logical step of outlining a strategy for implementing the NHII. Developing a comprehensive information infrastructure that meets both routine and emergency health information needs will require coordination and synergy among the many disparate efforts that are already under way. This will not happen without leadership.
In this report, NCVHS recommends a strategy that places the U. S. Department of Health and Human Services at the center of a collaborative process, with specific suggestions for how the Department can exercise leadership and seize the opportunity and existing momentum to help bring the NHII into being. In addition to offering a detailed implementation plan, these recommendations are unique in that they are comprehensive; they stress the need for information flow across sectors and with the public; and they attach equal importance to the personal health, healthcare provider, and population health dimensions.
Background and Overview of the Report
The National Committee on Vital and Health Statistics published its first report on the NHII in 1998. 7 The Committee concluded that the national information infrastructure that had been evolving with Federal support conspicuously lacked a health dimension. Over the ensuing 2 years, the Committee's NHII Workgroup developed a multifaceted vision for the National Health Information Infrastructure, which it described in a June 2000 Interim Report. (See the Appendix, page A-1.) In keeping with recent usage, the Workgroup on the NHII uses a very broad notion of infrastructure that emphasizes health-oriented interactions and information-sharing among individuals and institutions, rather than just the physical, technical, and data systems that make those interactions possible.
Following publication of the Interim Report, a wide range of stakeholders validated the Committee's vision for the NHII in four NCVHS hearings held around the country. 8-11 Stakeholder comments contributed to the development of the recommendations that are the centerpiece of this Final Report, building on the vision and seeking to move it toward implementation. Taken together, the NCVHS recommendations outline a collaborative public-private process with key leadership and support from the Federal Government — the one partner with the resources and the authority to take the lead. The Committee's ultimate objective is the development of a comprehensive NHII that serves the public interest and meets the needs of all those who make health decisions.
This introductory section is followed by a brief overview of the NHII as envisioned by NCVHS. Section 3 then surveys the existing technical and functional components to build on for the infrastructure. It draws on authoritative reports by the National Research Council of the National Academy of Sciences, the President's Information Technology Advisory Committee (PITAC), and the NCVHS Report on Standards for Patient Medical Record Information (PMRI). Section 4 looks at current public-and private-sector programs and activities that can contribute to the NHII. The Canadian Health Information Roadmap and Infoway/ Infostructure are described as exemplary plans whose implementation is well ahead of that in the United States.
Section 5 sets the stage for the Committee's recommendations by discussing key aspects of an effective implementation strategy, highlighting the importance of leadership and resources, and noting the gaps and barriers that stand in the way of realizing the NHII vision. The recommendations, which conclude the report, are directed at nine groups of stakeholders: the Federal Government, State and local government, providers, plans and purchasers, standards organizations, the information technology industry, consumer and patient advocacy groups, community organizations, and academic and research organizations.
2. The NHII Vision in Brief
Definition and Key Elements
Avoiding adverse events: Concerned about his persistent cough, Mr. A. visits his doctor, Dr. Z. At the end of the visit, Dr. Z. advises Mr. A. that she will transmit an electronic prescription to the pharmacy. Dr. Z. enters the medication choice in Mr. A. 's electronic medical record, which is integrated with a prescription alert system, and receives a warning that, after taking this same medication, some patients with similar health conditions have experienced adverse effects, such as a rash and muscle cramps. Dr. Z. substitutes a different medication that is equally effective, which Mr. A. can take without incident. Dr. Z's clinical practice management system also has received a general alert from the drug manufacturer to avoid prescribing Dr. Z's first medication choice to patients with certain health conditions. The system automatically reviews all patients' records, finds no others currently taking the medications, and updates its internal drug review program.
As envisioned, the National Health Information Infrastructure is fundamentally about bringing timely health information to, and aiding communication among, those making health decisions for themselves, their families, their patients, and their communities. Individuals, healthcare providers, and public health professionals are key NHII stakeholders and users, and the applications that meet their respective needs are distinct dimensions of the infrastructure.
Health information is stored in many locations, including providers' offices, organizational and governmental Web sites, and population health databases. The NHII will give users access — when it is appropriate, authorized by law and patient approval, and protected by security policies and mechanisms — to a hugely diverse array of information that includes community health data, personal health histories, consumer and clinical information, research findings, and much more.
Because information technology can be useful only when the nontechnical elements are well established, the NHII is only secondarily about technology. Taken as a whole, the NHII includes the values, practices, relationships, laws, standards, systems, applications, and technologies that support all facets of individual health, health care, and population health. It encompasses tools such as clinical practice guidelines, educational resources for the public and professionals, geographic information systems permitting regional analysis and comparisons, health statistics at all levels of government, and many forms of communication among users.
Responding rapidly to individual emergencies and local public health threats: 66-year-old Mrs. F. and her sister are camping in a national park. While hiking, she experiences severe stomach and chest pains. She activates her wireless automated medical alert system, which includes a global positioning system. It alerts the closest emergency medical team, which arrives quickly. Simultaneously, Mrs. F. 's own cardiologist, Dr. Y., in another State receives the same alert. The emergency team, which has standing permission to access relevant medical history in patients' online records, rushes Mrs. F. to the closest emergency room. All the necessary patient information is available to Dr. X., the physician on duty in the emergency room, when Mrs. F. arrives. After a thorough examination and tests and online consultation with Dr. Y., Dr. X. determines that Mrs. F. probably has gastroenteritis, advises her to drink lots of fluids, and clears her to return to her camping trip. Mrs. F. 's electronic personal health history and medical record are simultaneously updated with the information from the emergency room visit. Dr. Y., the cardiologist, is notified that Mrs. F. is cleared to continue her trip. The local public health department automatically is notified and de-identified health information from Mrs. F. 's emergency room visit is added to its database on incidents in local parks. That afternoon, health department staff identify a broken sewer line that contaminated park drinking water and caused the outbreak of bacterial gastroenteritis.
As defined by the Committee, the infrastructure includes these basic elements, each of which is necessary, but none of which is by itself sufficient:
The guiding purpose of this NHII initiative is making possible the appropriate use of data, information, and knowledge in support of optimal health and quality of life for all Americans. This purpose emphasizes that the full potential of the NHII will not be achieved until its benefits can be shared equally by all. This means that technology and electronic information and services must be available in all homes and communities. This purpose also reflects the importance of privacy and confidentiality, consumers' control of their personal health information, cooperation, respect for the doctor/ patient relationship, and prudent use of resources to minimize both overuse and underuse as the underlying values of the NHII.
- Practices and relationships
The NHII will be established to facilitate appropriate health information and knowledge flow and communication both within sectors and between them. These sectors encompass, among others, healthcare organizations, community organizations, physicians, consumers, public health professionals, researchers, and policymakers. Knowledge sharing, information management, and communication are vital facets of the relationships between healthcare providers and patients, between public health organizations and healthcare organizations, and among peers (e. g., provider-to-provider or consumer-to-consumer). To date, structural and cultural — and, frequently, competitive — forces have worked against horizontal information flows in the health field. Realizing the full value of the NHII will involve changes in the information sharing practices of every constituency, including consumers, that will only happen when individuals and organizations recognize the benefits they can derive once they make those changes.
- Laws and regulations
Laws and regulations create the framework for the NHII. They set the ground rules within which private entities and Government agencies may conduct health-related business and individuals may use information. In addition to issues of privacy, security, and standards, which are covered below, Federal and State legislation establishes requirements for payment for medical services, professional licensure and liability, and intellectual property protection and equitable access. It also set rules for reporting information considered vital for public health. Legislation authorizes the use of public resources for NHII-related research, development, and training, not only for leading-edge technologies but also for innovative public health and medical practices. Laws and regulations promoting the portability of health information will be essential for the NHII.
The health information infrastructure's proper functioning depends on enactment of national legislation on the privacy, confidentiality, and security of health information. The legislation must specify the conditions under which personal health information may be collected, stored, and shared, as well as penalties for abuses. The HHS privacy regulations are a step in that direction. In this context, it is important to stress what the NHII is not. The NHII does not require an integrated national database of medical records. In fact, healthcare providers will retain responsibility for maintaining their own patients' medical records. The confidentiality of personal health records and consumers' control over their own records are basic tenets of this vision, consistent with the HHS privacy regulations. The Committee expects that privacy and confidentiality protections will improve in the context of the NHII.
Standards are the building blocks of effective health information systems and are essential for efficient and effective public health and healthcare delivery systems. The Committee believes that standards set the foundation upon which innovation in the health information technology field can be built. Health data standards are critical to support the flow of information throughout the public health and healthcare systems. Standards are needed for core data sets; classifications and terminologies; uniform identifiers; comparable methods for data collection and reporting; data access, disclosure, and confidentiality; and data transmittal. Section 3 contains further information about electronic data standards. The Health Insurance Portability and Accountability Act (HIPAA) has put in motion activities that are moving health information toward standardization. NCVHS has set forth a comprehensive set of recommendations to enhance the effectiveness of clinical transaction standards and the development, distribution, and maintenance of clinical medical terminologies in its Report to the Secretary on PMRI Standards. 12
The tangible technical aspects of the NHII include network backbones such as the Internet in its present and future versions; the World Wide Web; wireless connections; hardware such as computers, Internet appliances, and handheld devices; and applications for information management, decision-support tools, communication, and transactional programs. Also involved are technical capabilities in areas such as bandwidth and latency. 13 A critical part of the NHII strategy will be proactive efforts to ensure that technologies and standards that enable these technologies evolve specifically to meet health needs.
- Systems and applications
Clinical and public health information systems are the chief engines of the NHII. They capture, store, organize, and present data about medical care and population health status that are crucial for routine work, problem solving, planning, and emergency response. Applications enabling these systems to perform and communicate are already quite robust, but they tend to be vertical stovepipes of numerical content only. A fully developed NHII would improve cross-system data exchange and enhance multimedia and geospatial capacities. Essential nondata applications include interpersonal communications (text, voice, and video), remote monitoring and reporting, transactional services such as scheduling appointments and purchasing items, and interactive educational and decision-support tools for professionals and the public.
An overarching principle applies to all the elements mentioned above. It is critically important that the NHII vision and its embodiment be large enough to accommodate major changes in the future. The NHII is by its nature dynamic; every one of the elements listed above will evolve, just as the content of information and knowledge will change. All of the entities contributing to the NHII must therefore think big — especially the Federal Government in its leadership role. In order to coordinate stakeholders appropriately and see that everyone can benefit from the evolving information infrastructure, HHS must craft a national health information policy that is broad and flexible enough to encourage and channel — rather than inhibit — positive change.
Three Dimensions: Personal Health, Healthcare Provider, and Population Health
As noted, the NCVHS Interim Report on the NHII (in the Appendix) presents the Committee's thinking in some detail, with extensive examples. Here we summarize the structure as conceptualized by the Committee and affirmed by stakeholders. The functions of the NHII can be illustrated by exploring three interactive and interdependent dimensions. (See the figure below.) They are defined by what they encompass, whom they serve, how they are used, and who has primary responsibility for content and control. The dimensions provide a means for conceptualizing the capture, storage, communication, processing, and presentation of information pertaining to the three major groups of users of information for health: consumers, healthcare providers (both individuals and organizations), and communities (local, State, and national). The Committee calls them, respectively, the personal health dimension, the healthcare provider dimension, and the population health dimension.
- The personal health dimension supports individuals in managing their own wellness and healthcare decisionmaking. It includes a personal health record that is maintained and controlled by the individual or family, plus nonclinical information such as self-care trackers and directories of healthcare and public health service providers.
- The healthcare provider dimension promotes quality patient care by providing access to more complete and accurate patient data on the spot, around the clock. It encompasses information such as provider notes, clinical orders, decision-support programs, and practice guidelines.
- The population health dimension (called the community health dimension in the Interim Report) includes information on both the health of the population and the influences on it. The population health dimension makes it possible for public health officials and other data users at local, State, and national levels to identify and track health threats, assess population health, create and monitor programs and services including health education campaigns, and conduct research.
Consumers, providers, and those responsible for population health at all levels use much of the same information; but they do so for different purposes — respectively, to manage personal and family health, to care for patients, and to protect and promote the health of the community and the Nation. All of these groups also have an interest in using information to track the effects of public policy and to engage in efforts to influence it. The role of some key participants in the NHII may cross multiple dimensions. Health plans' activities, for example, are reflected in both the healthcare provider and personal health dimensions. The idea behind the NHII is to push information and knowledge to the point where all these health decisions are made, so the right decisions can be made at the right time.
3. Technical and Functional Building Blocks of the NHII
Integrating information to make rapid improvements in patient care: Mr. B., who has a history of allergies and asthma, complains to his physician, Dr. W., of difficulty breathing, dizziness, and weakness. Dr. W. reviews Mr. B's electronic personal health history and medical record and checks the online decision-support system. A warning flashes on the monitor that a citywide air pollution alert is in effect. Dr. W. concludes that poor air quality has triggered Mr. B's problems and that relatively inexpensive modifications to Mr. B. 's existing medication regimen are all that's needed. Mr. B. agrees to use his home health monitoring system to take blood and pulmonary tests and have the results sent automatically to the doctor. Two days later, he has not improved, so Dr. W. modifies his medications. The practice's interactive medication alert system indicates a rare interaction from the drug combination for some patients. After further research using the hospital's knowledge management system, Dr. W. concludes the warning does not apply and prescribes the new regimen. Mr. B. begins to improve within 2 days.
A number of existing technologies, applications, and standards have the potential to be part of the NHII and, with adequate coordination, to serve the goal of providing timely health information to all who need it. The healthcare sector, for example, has been investing in specific applications, such as electronic medical records, digital imaging systems, and personal digital assistants. Consumers can use personal health records systems on Web sites to manage their information. Public health officials are using geographic information systems to enhance surveillance capabilities. For the most part, however, the three dimensions of the NHII have been evolving on separate technical and functional tracks and at an uneven pace. Moreover, according to the National Research Council (NRC) and the President's Information Technology Advisory Committee, the right technologies and functions have not been developed to support the demanding circumstances of health decisionmaking and health care. 6,13 One overarching problem is the slow development and uneven implementation of standards that allow technologies and information to be linked effectively. This has hindered private-sector innovation and public-sector responsiveness.
The Internet is the network platform for the NHII, and it will support functions and applications across the personal health, healthcare provider, and population health dimensions. The NRC has identified many of the applications and technical challenges for the three dimensions. (See Table 2.)
Many pieces of the NHII are already well-established parts of the information and communication infrastructure in the United States. These technical pieces are not necessarily health-sector specific. They are technologies that are already available to, affordable for, and widely used in multiple sectors of U. S. society. These core technical components include, among others, the Internet and the World Wide Web, e-mail, databases, search engines, listservs, electronic data interchange (EDI), and encryption and authentication technologies. In many cases, the technologies have already been adapted to health-specific applications and functions and are being used extensively by consumers, clinicians, and public health officials for information, education, and data management. However, the full potential of even these fundamental technologies for decision support, coordination of care, and public health improvement is far from realized. 6,13,14
In other cases, the health-specific applications and functions of technical components are only now taking shape or they may be utilized by only a few organizations and individuals. Examples of applications and functions that are only partially disseminated in the health sector include broadband; geographic information systems; remote video, sensing, and monitoring; customized computer interfaces and tailored Web pages; digital signatures and certificates; and wireless technologies. Pockets of users exist, but their activities and their ability to exchange information are constrained by lack of resources, organizational and professional boundaries, and traditional ways of communicating and doing business. Fuller use of these — and established — technologies can support telemedicine, electronic health records (clinical or consumer), integrated clinical information systems, disease management, digital prescribing, provider-patient e-mail, cross-database searching, and timely public health alerts.
Table 2 — Selected Health Applications of the Internet
Real-Time Video Transmission
Static File Transfer
Information Search and Retrieval
Primary Technical Challenges
Remote medical consultations to the home, office, or wherever the patient is located.
Accessing personal health records online. Downloading educational videos. Sending periodic reports on health conditions to a care provider.
Remote control of patient monitoring equipment.
Online searching for health information or self-assessment guides. Looking for a doctor or hospital.
Collaboration with care providers. Participation in chat groups and support groups.
Protection of sensitive patient information from breaches of confidentiality and from corruption. Ubiquity of access so that all healthcare consumers can be reached at the location at which care is needed. Tools and policies for validating the quality of online information.
Remote medical consultations between clinician and patient or between two clinicians.
Transfer of medical records and images (e.g., X-rays, MRI, CT scans).
Remote and virtual surgery (a long-term possibility being examined by the defense and space communities).
Practice guidelines. Searches of professional medical literature.
Consultation among care providers, such as for surgical planning, which may involve manipulation of digital images.
Access to sustained bandwidth and low latency for remote consultations and collaboration. Security of clinical records. Network reliability. Ubiquity of access for care providers.
Videoconferencing among public health officials during emergency situations, such as chemical or biological attacks by terrorists.
Incident reporting. Collection of information from local public health departments and laboratories. Surveillance for emerging diseases or epidemics. Transfer of epidemiology maps or other image files for monitoring the spread of a disease.
Access to published literature and research results as well as epidemiologic data. Delivery of alerts and other information to practitioners or other health workers.
Videoconferencing among public health officials during emergency situations, such as chemical or biological attacks by terrorists.
Security to ensure confidentiality and integrity of laboratory reports and other public health information that may contain personal identifying information. Network reliability. Security from information warfare or attacks on the network's physical infrastructure.
Adapted with permission from Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics, and Applications, National Research Council. 2000. Networking health: Prescriptions for the Internet. Washington, DC: National Academy Press.
There are no authoritative national reports on technology adoption in healthcare organizations. Industry surveys have found uneven diffusion of technologies and functions, although organizations report that they recognize the administrative and clinical factors that drive the need to share health information. 15 In 2001, provider organizations report that the technologies they most widely use include high-speed networks (83 percent), data security systems (78 percent), client-server systems (75 percent), and intranets (75 percent). Thirteen percent of providers have a fully operational Computerized Patient Record (CPR) system in place, virtually unchanged from 2 years ago, although another 53 percent report that they are either beginning to install the hardware and software for CPRs or have planned CPR implementation. Thirty-one percent are using handheld PDAs, and 37 percent currently employ wireless information appliances. Almost all organizations have a Web site, which is used overwhelmingly for marketing and promotion but will soon provide more functions, such as patient scheduling and electronic patient-physician communication. 16 Twenty-five percent of provider organizations already have an installed base for patient-provider e-mail. 15
These same surveys indicate that if healthcare organizations follow through on their plans, the picture may change rapidly in the next 2 years. A survey of 44 practice group managers found that 80 percent expect to do electronic charting by 2003, compared with 25 percent today. And 82 percent expect to automate prescription writing by 2003, compared with 16 percent today. 17 A variety of wireless appliances and applications also will support clinicians, consumers, and public health officials in the NHII. For example, Harris Interactive estimates that 50 percent of the country's physicians will be using handheld devices by 2005. But that could change markedly if insurers, employers, hospitals, and other providers mandate physician usage for prescription writing, charge capture, and results and order verification. 18 Public health workers are pilot-testing wireless systems for data transfer and communication from distant sites. 19
This picture of current and planned use of technology does not give a definitive view of which technologies will be implemented and for what purposes. Many implementation challenges confront organizations and end-users. Some problems will require changes to the technology; others will require changes to processes and practice. Research on the ultimate cost effectiveness of the new technologies is similarly uneven. 14,20
To support the multifunctional environment described above, the Internet, which is the backbone of NHII connections and communications, must be strengthened. It is relatively stable for some functions, such as unsecured e-mail and the exchange of small text-based files, but unstable for other functions, such as real-time telemedicine consultations and remote multimedia simulations. 13 The Internet and connected devices remain vulnerable to attack and disruption of service. 13 As mentioned throughout this report, though, the limitations of the infrastructure are not just technical. New policies and practices will be required to achieve the infrastructure's fullest use.
Accelerating public health responses and outreach: A major city has an Aerometric Information Reporting System that issues emergency alerts when local air quality does not meet National Ambient Air Quality Standards. The alerts trigger a detailed automated air pollution emergency response protocol. Local media, physicians, hospitals, nursing homes, home health agencies, and community information kiosks all receive the emergency notices to alert and protect vulnerable individuals. Some individuals especially at risk from poor air quality have signed up to receive notices on their personal information appliances. After a few days of poor air quality, automated tracking systems indicate that older persons, infants, and poor, non-English speaking immigrants close to industrial zones have greater than normal numbers of emergency room (ER) visits. The health department intensifies its outreach to these groups with information about how to cope with the situation, and immediately sees a drop in ER visits.
One of the ways the NHII could be strengthened is through more rapid adoption of and compliance with existing standards and accelerated development of other needed standards. As the Committee has noted on numerous occasions, standards are an essential component of the NHII. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) provides a platform for the exchange of financial, clinical, and administrative information in healthcare transactions. The HIPAA financial and administrative transaction standards were released as regulations by HHS on August 17, 2000. These regulations will serve as a catalyst to move the healthcare industry to use more efficient and standardized electronic communications for communicating health claims, enrollment, eligibility, remittances, and related transactions. HIPAA includes not only financial and administrative transaction standards but also standards for privacy and security. Eventually, standards should make it possible to have a network architecture that is all but invisible to end users.
Along with the HIPAA financial and administrative transaction standards, a comprehensive set of Patient Medical Record Information (PMRI) standards can move the Nation closer to a healthcare environment where clinically specific data can be captured once at the point of care with derivatives of this data available for meeting the needs of payers, healthcare administrators, clinical research, and public health. This environment could significantly reduce the administrative and data capture burden on clinicians; dramatically shorten the time for clinical data to be available for public health emergencies and for traditional public health purposes; profoundly reduce the cost for communicating, duplicating, and processing healthcare information; and, last but not least, greatly improve the quality of care and safety for all patients. NCVHS issued preliminary recommendations in 2000 and will recommend HIPAA PMRI standards in 2002.
The Committee also recommended standardizing a core set of data elements for enrollment and encounter in a 1996 report on Core Health Data Elements. Uniform collection of these elements would enhance administrative as well as clinical data. 21
A number of U. S. standard development organizations have developed clinical transaction standards for various purposes (ASTM, HL7, DICOM, OMG, IEEE, NCPDP) a and some of these, HL7 and DICOM, are in widespread use in the United States, Europe, and the Pacific Rim. However, substantial standardization work remains. Compliance testing is needed to ensure a uniformity in the adoption of these standards. Standards for codes that give specific meaning to the content of these messages also are needed. A number of medical terminologies with important levels of usage and utility already exist for various domains, including the Systematized Nomenclature of Medicine (SNOMED), the Logical Observation Identifiers Names and Codes (LOINC), and the Medical Collaborations Interactive Network (MEDCIN), but the adoption of these is limited. b Existing codes for some subject domains do not meet the needs of clinical records. For example, the National Drug Code does not include all drugs, and it is suitable only for inventory control of packages, not for prescribing where the active ingredients, dosage, and manner of administration need to be identified.
4. Contributing Activities and Prototype Programs
This section begins by looking at two areas — privacy/ confidentiality and standards — that cut across the three NHII dimensions. Next, programs, activities, and technologies are identified that seek to involve or benefit multiple groups. In each case, the impact of the programs, activities, and technologies would be enhanced if they were part of a comprehensive NHII framework. The section ends with a description of Canadian activities, which provides an invaluable model for the United States.
Privacy protections and practices. Ensuring the confidentiality and security of personal health information is paramount in the NHII. Privacy policies and practices continue to evolve, particularly for clinical and personal health information. All public health uses of information are already controlled by Federal and State laws and will remain so in the future.
In its June 1997 report to HHS, NCVHS made its privacy recommendations and stressed the need for national legislation to protect the confidentiality of medical records. The privacy regulations issued in 2001 by HHS in the absence of congressional action establish strong protections for individually identifiable health information that is held or transmitted by health plans, providers, and healthcare clearinghouses and sanctions for its misuse. 22 Although the regulations do not go into effect until 2003, and their legal status is being challenged, many healthcare providers and health Web sites are already implementing the regulations in anticipation. Their policies and specific practices vary greatly. Some major organizations have recognized that actions to improve privacy protections are a means to gain the confidence of consumers and patients. Prior to the issuance of the privacy regulations, numerous groups composed of private-and public-sector representatives (many of whom operate consumer-oriented health Web sites) developed their own guidelines for the management of personal information. These guidelines have evolved into standards and an accreditation process for health Web sites. 23
Standardization. In the context of HIPAA, standards development is a long-term, national, public-private initiative that is closely linked to the development of privacy protections. Like privacy activities, standards development cuts across all NHII dimensions. While incomplete, the process is gradually laying a platform for the NHII that will increase in usefulness the more it addresses the information needs in each of the NHII dimensions. The greatest progress so far has been made in the healthcare provider dimension. HIPAA not only establishes standards but promotes consolidation of standards development, updating, and maintenance efforts. HHS has encouraged these efforts by recognizing a group of Designated Standard Maintenance Organizations (DSMOs) to manage the maintenance of the EDI standards adopted under HIPAA. The American National Standards Institute's Healthcare Informatics Standards Board (ANSI HISB) provides coordination and collaboration among the healthcare informatics organizations to promote and facilitate voluntary consensus for national standards. ANSI HISB is supporting the development of the United States Health Information Knowledgebase (USHIK) metadata registry to assist in cataloging and harmonizing data elements across organizations. It also provides a forum for the HIPAA DSMOs to coordinate their efforts to define a common HIPAA electronic signature standard. International organizations are also important. c The International Organization for Standardization's U. S. Technical Advisory Group (ISO US TAG) coordinates the positions of U. S. standard development organizations for representation at the ISO Technical Committee 215's Committee on Healthcare Information Standards. Collaboration of government agencies and private industry within standards development organizations will be essential for creating optimum standards.
In the population health arena, various efforts are under way to improve cooperation between the public health and standards development worlds, with the Public Health Data Standards Consortium taking the lead. Since its establishment in 1999, the Public Health Data Standards Consortium has identified high-priority data needs, developed an educational strategy for public health databases to migrate to existing data standards, and established several workgroups to advance the incorporation of critical public health data into national standards.d
While these efforts do not directly impact the personal health dimension, they will benefit consumers to the extent that all these efforts ultimately contribute to appropriate information exchange across all the dimensions. Standards efforts unique to the personal health dimension are discussed below. The many technical and functional building blocks that standardization is contributing to NHII development were reviewed in Section 3.
The Healthcare Provider Dimension
Private-sector strategies. Although the healthcare sector as a whole lags significantly behind other sectors in integrating informatics and communication technologies, as noted above, some private-sector provider organizations have already made the strategic move toward fully integrated systems. For example, Kaiser Permanente is investing $2 billion for a Web-based system that includes a nationwide clinical information system, patient communication with doctors and nurses for advice, online guidelines and protocols for providers, and all administrative functions. 24 Partners Healthcare System is implementing a system on a virtual private network that includes electronic medical records, patient communication with providers, knowledge resources for doctors, and computerized provider order entry.25 The "100 most wired" hospitals and health systems provide clinicians with access to patient data; offer Internet-based services to patients, clinicians, administrative staff, suppliers, and health plans; and provide online disease management. 26 They appear to be benefiting from better control of expenses, higher productivity, and more efficient use of services. 27
These experiences are helping to clarify not only what works and what doesn't, but also how to measure return on investment. Lessons to date suggest that calculations based on a broad, long-term assessment of returns are more useful than those looking at specific projects or technologies and that while clinical, organizational, and process improvements may be important, so too are market visibility, customer satisfaction, and employee morale.
Collaborative activities. Some healthcare plans and providers are exploring collaborative efforts. Seven health plans formed MedUnite to jointly develop a common Internet-based healthcare business transaction system (www.medunite.com). A group of national and State medical societies established Medem to provide health information for consumers and customized online patient communications for physicians (www.medem.com). Efforts such as these that extend across multiple organizations will be vital components of the NHII, but they also underscore the need for national coordination and leadership.
Enhancing continuity of care and public health outreach: Everyone benefits from automated vaccination records that are part of electronic personal health histories and medical records. Parents can track their children's immunizations over time, even if they see different physicians. Parents and doctors can receive automatic reminders when the next vaccination is due. Local vaccine reporting systems can aggregate anonymous patient data to show immunization rates by individual physician, practice group, and neighborhood. Public health officials can then compare local, State, and national rates, compare rates against CDC guidelines, and target areas for outreach and improvement.
Federal healthcare programs. The Federal healthcare sector, too, is laying the foundation for integrated healthcare and information systems. The Military Health System (MHS) is rolling out its E-Health Project, designed to improve healthcare services and benefits to military personnel and their dependents through the strategic use of the Internet (www.tricareonline.com). The project is designed to provide a common Internet entry point for MHS customers, making it easier for beneficiaries to learn how to access MHS services and benefits. It will also ensure appropriate privacy policies and practices and facilitate portability of benefits. This is the first central effort to develop enterprise-wide business rules and a single, common Internet portal for all U. S. Department of Defense (DoD) patients, providers, and managers. The project is in the early stages of development and will be implemented incrementally.
The U. S. Department of Veterans Affairs' "One VA" initiative is designed to use information technology to improve service to the 26 million men and women who have been honorably discharged from the military and their families. 28 It includes e-mail with providers and other specialists, Internet-based self-service for VA transactions, and many other functions. Several VA hospital systems are among the "100 most wired" listed above, with well-established clinical information systems. Both DoD and VA also have been pioneers in clinical telemedicine. Ultimately, the lessons from these pilot projects can be integrated into the full spectrum of Federal healthcare delivery and health insurance. Their impact on the provision of health care will be felt by private-sector providers as well, through general technology transfer and the purchasing power of the Federal Government.
The Population Health Dimension
Comprehensive reassessment and visioning. NCVHS began a process in 1999 to define a vision for health statistics in the 21st century, working jointly with NCHS and the HHS Data Council. Health statistics are an important aspect of the population health dimension. They characterize the health of a population and the influences on the health of a population — factors that include the environment, genetic and biological characteristics, health care, community resources, and political and cultural contexts. Health statistics are used to design, implement, monitor, and evaluate specific health programs and policies.
The health statistics visioning process has involved discussion groups that met throughout the United States, regional public hearings, expert meetings, forums at professional association meetings, and a National Academy of Sciences workshop. The overall objective was to elicit a broad range of expert opinion from public health and medical professionals on the major trends and issues in population health and their implications for future information needs. The visioning process will result in the publication of a final report in 2002. The report will include suggestions for program planning and criteria for evaluating future health statistics systems. The NCVHS Workgroups on the NHII and on 21st Century Health Statistics have coordinated their efforts. One of the anticipated benefits of these closely related endeavors is that the work products will clarify the interconnections between population health and individual health and those between health and health care, as well as the implications for health information policy.
Local, State, and Federal systems. With current legacy public health systems, information on population health is transmitted from localities to States to the Centers for Disease Control and Prevention (CDC) via stovepipe systems that have evolved separately as a result of categorical congressional funding. CDC has several initiatives to link these self-contained, unconnected systems.
The Health Alert Network (HAN) is a nationwide integrated information and communications system that serves as a platform for distributing health alerts and disseminating prevention guidelines and other information. 29 It also serves as a platform for CDC's bioterrorism initiative and other efforts to strengthen State and local preparedness. The HAN currently encompasses 39 States. When completed, it will ensure high-speed, secure Internet connections for local health officials; capacity for rapid and secure communications with first-responder agencies and other health officials; capacity to securely transmit surveillance, laboratory, and other sensitive data; and an early warning broadcast alert system. The project includes training for public health workers in the use of information technology.
The National Electronic Disease Surveillance System (NEDSS) is a broad initiative using data and information system standards for development of efficient, integrated, and interoperable surveillance systems at State and local levels. 30 NEDSS is built so that data from healthcare providers can be sent to the health department via a secure "pipeline" to protect sensitive data. The focus initially has been on tracking systems for infectious diseases, including emerging infections, and management of possible bioterrorism events. Fifty States have received funding to plan and, in 36 health jurisdictions (35 States and 1 metropolitan health department), to implement NEDSS compatible systems. A NEDSS compatible system for State use, the NEDSS Base System, is also being developed that will incorporate standard messages, a database model, and a platform for other modules. Twenty health jurisdictions have received funding to implement the NEDSS Base System in 2002.
Data definitions. CDC's related Public Health Conceptual Data Model provides the framework for categories of data for public health, especially surveillance. It already has been helpful in representing public health data needs to standards development organizations, specifically to promote the inclusion of the public health perspective in standards development. (This is also the objective of the Public Health Data Standards Consortium.) The model is being harmonized with the HL7 Reference Information Model. In addition to engaging in developmental work with States, standards development organizations, and other stakeholders, CDC has begun integration testing of the NEDSS Base System at the State level. 30
The Personal Health Dimension
Consumer attitudes about health and health care are another important element in the NHII. With health premiums rising steeply and retiree health benefits expected to diminish, consumers will need to take increasing responsibility for their own health and for decisions about appropriate treatments and acceptable outcomes.
Upgrading public health resources for the identification of bioterrorist threats: The Illinois Department of Public Health (IDPH) is notified of a credible threat that plague bacteria may be used in an act of bioterrorism. The IDPH sends out an alert through the Health Alert Network (HAN) to all local health departments. In addition, a similar alert is sent to all hospitals and emergency departments. The signs and symptoms of all forms of plague are incorporated into a software object that is then downloaded to the clinical information systems of clinicians throughout the State. Dr. T.'s system identifies two patients with a matching clinical profile in his practice. After approval by Dr. T., the system notifies the two patients by phone and their home health information system. They agree to come in later that day. That morning Dr. T. sees a patient who appears to have pneumonia and is coughing up blood. He prepares to send the patient to the hospital for x-rays and cultures when his office information systems warn him that this patient's symptoms fit the recently updated public health surveillance profile. He forwards a notice to the public health department and sends the patient into the hospital for further evaluation. The public health laboratory assists in making the diagnosis of a common pneumonia. Patterns of reports by Dr. T. and other physicians are monitored by IDPH as they continue to be alert to a potential terrorist act.
Consumers and patients have been rapid adopters of electronic communications and are using the Internet for information searching, social support, e-mail, health assessments, and other elements of personal health management. (See Table 3.) Patients are also demanding — and are willing to pay more for — online interaction with their healthcare insurers and providers. A recent survey found that 34 percent of e-health consumers would pay extra for the ability to manage their benefits online, and 25 percent would pay more for online interaction capabilities with their physicians. It was also found that 20 to 25 percent of these consumers would switch health plans or physicians to gain such capabilities. 31
In addition to these uses of information for self-care and for medical care decisions, citizen advocacy groups are increasingly using health statistics for their communities to study concerns such as environmental health and health disparities, in order to influence public policy and practices in these areas. Such efforts are engaging stakeholders from all three dimensions. e
Health information quality. One of the most important barriers to the use of information and communications technologies to enhance health is the variable quality of the health information available through the Internet. Consumers are at risk for wasting money on useless products, avoiding needed medical care, or accepting harmful treatments. The U. S. Department of Health and Human Services has addressed this concern by developing healthfinder®, a comprehensive, user-friendly portal to reliable Internet health resources and sites (www.healthfinder.gov). A free service, healthfinder® gives users access to more than 5,000 resources on more than 1,800 topics. The organizations that provide the resources have been reviewed and identified as reliable providers of information for the public. The Web site is coordinated by the Office of Disease Prevention and Health Promotion, which also oversees the HHS Healthy People initiative.
Consumers' Use of Internet-Based Health Information Services for Decisionmaking
More than 50 percent of Americans with Internet access have turned to Web sites to find health or medical information that they use to make decisions about their health.
Source: Fox S and Rainie L. November 2000. The online health care revolution: How the Web helps Americans take better care of themselves. Washington, DC: Pew Internet and American Life Project.
The development of quality criteria for health Web sites is an emerging area that may bring improvements in the reliability of online health information and services. Healthy People 2010 has set a national objective to increase the number of health Web sites that disclose critical elements of operations so that users can assess the quality of the site. Private and nonprofit organizations have developed codes of ethics and standards that will be used to accredit health Web sites. For example, URAC, an accreditation body for healthcare organizations, has developed a set of quality standards for health Web sites. 23 Organizations may apply to URAC to have their Web sites reviewed and accredited. If applied broadly and enforced consistently, quality criteria for health Web sites may provide measurable improvements that will help consumers identify the most appropriate Web resources for their needs.
Improving individuals' ability to self-manage chronic conditions: With the help of a multimedia home information center, a 50-year-old mother, Mrs. M., manages her family's health. She receives automatic alerts and e-mails from her own doctors and her daughter's, and she also receives health information tailored to her specifications. For example, the last time her daughter had an asthma attack, Mrs. M. was able to e-mail information about her daughter's condition to the physician, receive advice within 2 hours, and avoid a trip to the emergency room. Because Mrs. M. is an authorized user for her dad's personal health information manager, she and her father, who lives far away and has emphysema, are simultaneously alerted when the air quality index in his community shows high levels of pollution. Her father also has a voice-activated medication reminder service that he accesses from the information appliance in his kitchen. The reminder service tells him which pills to take when, and he confirms that he has taken the pills as directed. His daughter also can see whether he is taking his medications correctly. The medication reminder service also tracks the need for refills and automatically sends a refill request as needed to the mail order prescription service.
The Canadian Example
As it develops the NHII, the United States is fortunate to have an excellent, comprehensive model in the Canadian Health Infostructure. 32 The purpose, process, substance, and overall level of commitment of the Canadian initiative are highly pertinent examples for the United States. The similarities begin with the basic concept. The 1999 report launching the project explains that the term "the Canada Health Infoway or health infostructure . . . refers not just to the use of information and communications in health . . . [but also] to the health information the technologies create, the policies governing the use of this information, and the people and organizations who create the information and use this infrastructure." The Infostructure is composed of elements provided by provincial, territorial, and Federal health infostructure initiatives. The vision is to "allow these diverse initiatives to complement each other in improving the health of all Canadians." 33
Like the NHII, the Infostructure is a work in progress; however, its implementation is much further along. The initiative has been under development since 1998, with significant and growing support from the Canadian government. The initiative set out four strategic goals: empowering the general public, strengthening and integrating healthcare services, creating the information resources for accountability and continuous feedback on factors affecting the health of Canadians, and improving privacy protections within the health sector. The early years were devoted to consultations with stakeholders around Canada. Specific projects have since taken shape. In some provinces, such as British Columbia where HL7 messages and standardized codes are used for all drug prescribing and in development for linking laboratories, effective infrastructures are developing.
Canadian Infostructure efforts focus on the three areas covered by the dimensions of the NHII. To improve population health statistics, the initiative developed a Health Information Roadmap that provides "an action plan for the 21st century." 34 Its activities have served as an example for the 21st-century health statistics visioning initiative described above. And CDC, in its documents on the Public Health Conceptual Data Model, cites the Canadian Infoway as one of the "inputs" to the CDC model. For consumers, the Canadian Health Network (CHN) was established on the Web, following the U. S. healthfinder® and National Library of Medicine models, as a national, bilingual Internet-based health information service (www.canadian-health-network.ca/customtools/homcc.html). To improve health care, the Canadian government funded an independent corporation, the Canada Health Infoway, Inc. 35 Its objectives are to develop mechanisms to enable consumers to access health information that they can use, to facilitate the work of healthcare providers through technology, and to create a unified network of electronic health records across the continuum of care. It will identify investment opportunities with vendors and systems integrators and accelerate the development and implementation of computerized health information networks.
The Leap to the NHII
The foregoing review of functional and technical building blocks and contributing programs and activities shows that many of the basic components for the NHII already exist and are operating in their own spheres. What they lack is the interconnections that will make them more useful than they are as individual pieces. Now, new energy and resources must be introduced into the system to create a dynamic whole that is greater than, and beneficial to, all the parts. Leadership backed up by resources can bring the pieces together to craft the design of the NHII and bring it into being. We examine the new energy source and the required resources in the next section.
5. Leadership as the Cornerstone of Implementation
Gaps and Barriers
Testimony at the Committee's hearings on the NHII in 2000 and early 2001 highlighted limitations in leadership, resources, standards, privacy and confidentiality protections, and consensus about appropriate information sharing as major impediments to the development of the NHII. 8-11 It is clear that the chief barriers are human and institutional, not technological. In particular, many speakers focused on the lack of a strong Federal presence to guide the development of the NHII as the most significant gap impeding its realization. The Government is already making, and has made, critical contributions to the development of the information infrastructure — some of them described above. However, these contributions have taken the form of seeding rather than leading the process. What is needed now is a shift in focus from the parts to the whole.
The Committee heard calls for Federal leadership to bring about collaboration between stakeholders in the private and public sectors and among all levels of government. The Federal Government's responsibility for strengthening national privacy protections and supporting the development and implementation of standards also was noted, along with the need for new and expanded Federal funding. This infusion of energy, resources, and direction could help organizations with existing responsibilities for health information work together for maximum benefit. The urgency of improving health communication and information flows has increased greatly since the hearings, but the nature of what is needed, as laid out in this report, remains essentially the same.
Besides strong Federal leadership, the development process needs to engage a broad range of stakeholders. Many sectors, organizations, and population groups were described in the hearings as underrepresented in NHII development to date — not only consumer advocacy and health organizations, providers in small or isolated practices, community organizations, and many public health programs, but also standards development organizations, medical device manufacturers, insurance companies, and employer groups. This situation suggests that while some groups have been working hard to envision and stimulate the NHII, many other stakeholders either have not yet recognized its potential benefits or lack the resources to participate in its development.
Many stakeholders now and in the future will share the cost of building the NHII, but guiding and creating synergy among diverse investments, promoting standards, stimulating growth, and monitoring progress are duties that rest with the Federal Government. This calls for a combination of commitment, money, and vision. The areas where Federal funding is needed are outlined in NCVHS recommendations 1, 2, and 3 below. But money alone will not make the NHII happen; spending will be cost-effective only when it is guided by a national health information policy and implementation plan, also discussed in the recommendations. Without these, uncoordinated spending on information and communication capabilities by individual stakeholders, including the Federal Government, could exacerbate fragmentation and actually make future growth more difficult.
The examples of other countries are instructive in this regard. Over the past decade, Canada, Australia, and the United Kingdom have committed large sums to developing and implementing national information strategies; they have also officially adopted many U. S. standards. In 1998, Canada budgeted Can$ 95 million dollars for its 4-year Roadmap Initiative, and it now budgets more than Can$ 1.5 billion dollars a year for its health information infrastructure (Infoway), with an additional Can$ 500 million in Federal funds committed in 2001 to support a private company, Canada Health Infoway, Inc. (mentioned in Section 4). 36,37 The British government committed more than £1 billion in 1998 to a 7-year initiative to build information and communications applications for its health sector. 38 In each case, the significant spending is tied to a national vision and strategy. In the United States, Federal funding is scattered among multiple health and technology agencies with no overarching plan or coordination. Apart from a few efforts in the private and public healthcare sectors, mentioned in Section 4, there is no sustained financing for information technology investment or e-health service delivery. The series of events unleashed on September 11 particularly highlighted the lack of sufficient Federal funding to build the public health infrastructure all the way to the local level, the front line of public health services.
Disparate Responsibilites Create a Fragmented Environment
This report has shown that many NHII components already exist and that several entities have helped envision the national health information infrastructure. Moreover, numerous Federal agencies already have responsibilities for specific functions that are critical to the development and implementation of the NHII. Although the sheer number of activities offers a lot to build on, it is also a significant constraint. The current distribution of responsibilities creates a fragmented environment of separate programs governed by sector-specific mandates and policies. Transforming these diffuse elements into a comprehensive system of systems in accord with the vision requires the introduction of an entirely new set of energies, resources, and perspectives. One of the chief reasons that NCVHS recommends focused Federal leadership as the NHII evolves is that without such leadership the multitude of existing and new activities are far likelier to work at cross-purposes than to be additive and complementary.
Because of its mandate, HHS encompasses numerous agencies whose core missions or specific programs touch on the full array of NHII areas. (See Table 4.) Each of these will continue to play a vital role in their specific areas to ensure the NHII's development. HHS and the U. S. Departments of Defense and Veterans Affairs will have central involvement in the NHII because of their direct responsibilities to provide either health care or health insurance for millions of Americans.
Table 4 — HHS Agencies' Responsibilities Related to the NHII
Agency for Healthcare Research and Quality (http://www.ahrq.gov): Research on effective technologies and practices related to clinical care; development of clinical practice guidelines.
Deputy Assistant Secretary for Information Resources Management (http://www.hhs.gov/oirm): Information technology infrastructure within HHS.
Assistant Secretary for Planning and Evaluation (http://aspe.hhs.gov): General policy development and program evaluation.
Centers for Disease Control and Prevention (http://www.cdc.gov): Infrastructure for population health.
Centers for Medicare & Medicaid Services (http://www.cms.gov): Provision of care for older Americans; insurance for lower income and other disadvantaged populations.
Data Council (interagency) (http://aspe.hhs.gov/datacncl/index.htm): Coordination of data development.
Food and Drug Administration (http://www.fda.gov): Regulation of health-related products; monitoring and reporting on safety and adverse effects; coordination of a clinically useful drug code.
Health Resources and Services Administration (http://www.hrsa.gov): Rural telehealth and community health clinics.
National Center for Health Statistics (http://www.cdc.gov/nchs): Population health statistics.
National Institutes of Health (http://www.nih.gov): Biomedical knowledge creation and diffusion.
National Library of Medicine (http://www.nlm.nih.gov): Biomedical knowledge dissemination; research and dissemination on new technology and information networking practices.
Office of Civil Rights (http://www.hhs.gov/ocr): Privacy regulations enforcement.
Office of Public Health and Science (http://www.osophs.dhhs.gov/ophs): Consumer information policies and programs; crosscutting e-health and prevention issues.
Multiple Federal departments currently fund numerous initiatives and programs to promote access to computers, the Internet, telemedicine, and reliable health information. HHS, DoD, and VA have longstanding programs in telemedicine. The U. S. Departments of Commerce, Education, and Housing and Urban Development all direct programs that provide computer and Internet technologies in communities, and in some cases in individual homes. Healthy People 2010 includes an objective to promote household Internet access to extend the benefits of e-health; it also includes an objective to improve the quality and privacy practices of health Web sites. The umbrella Federal gateway, FirstGov.gov, includes health information as one of its main topics, using the health portal healthfinder® and other specific HHS Web sites as content sources. The National Institutes of Health, and the National Library of Medicine (NLM) in particular, are a premier source of both scientific and consumer-oriented information across the full spectrum of biomedical issues.
Numerous national institutions and entities have responsibility for information technology research and development and advising on information policy and programs. In addition to its responsibilities as an information provider, NLM has funded research on the Next Generation Internet and medical informatics.
As noted above, NCVHS is the advisory body to HHS and Congress on health information policy. The Institute of Medicine and the National Research Council, chartered by Congress, provide authoritative guidance on health and technology issues underpinning the NHII. The National Science Foundation has a leading role in identifying and advancing the technology research agenda. The National Coordination Office for Information Technology Research and Development oversees the crosscutting $2 billion Federal information technology research and development budget. The President's Information Technology Advisory Committee provides advice and guidance on all aspects of high-performance computing, communications, and information technologies.
States and local communities are deeply engaged in health improvement and services for their populations. States and communities provide public health infrastructure and the healthcare safety net. States also are responsible for licensing physicians and pharmacists. State licensure currently results in a diverse patchwork that is at odds with the NHII requirement for seamless and portable health care for a mobile population. New forms of Federal-State cooperation will be required to achieve the full benefit of care that goes beyond geographic boundaries.
Standards development organizations and medical terminology developers are spearheading the work to recommend information transaction standards and clinically specific terminologies as described in Section 3. The HIPAA Designated Standards Maintenance Organizations are now authorized to lead the ongoing process of maintaining and revising standards. These efforts have been a locus of public/ private collaboration, with strong NCVHS involvement, since HIPAA was enacted in 1996.
Several foundations are funding important research into areas touching the personal health dimension of the NHII, including the California Healthcare Foundation (www.chcf.org), the Robert Wood Johnson Foundation (www.rwjf.org), the Markle Foundation (www.markle.org), and the Pew Foundation's Internet and American Life Project (www.pewinternet.org). No national consumer advocacy group, however, has adopted consumer e-health as a major part of its agenda.
Activities and responsibilities such as those mentioned in this partial inventory have invaluable contributions to make to the evolving NHII. No existing entity, however, has the experience or authority to coordinate the activities of all the others and to create synergy among them. The question, then, is how to support all current and potential activities within a framework that maximizes coordination, collaboration, and innovation. After studying this question and consulting with many stakeholders, the NCVHS has concluded that a new senior position and office at HHS, equipped with adequate funding, are required to oversee and coordinate a broad range of policy, research, and program activities in different sectors.
Operationalizing the Recommendations
The NCVHS recommendations in the next section spell out activities and roles for each stakeholder group in building the NHII. The 27 recommendations are directed to 9 categories of stakeholders:
- The Federal Government, including the U. S. Department of Health and Human Services, Congress, and Federal health data agencies
- State and local governments, including State and local data and health agencies
- Healthcare providers, including membership and trade organizations and healthcare organizations
- Health plans and purchasers
- Standards development organizations
- The information technology industry
- Consumer and patient advocacy groups
- Community organizations
- Academic and research organizations
Of necessity, the recommendations are presented sector by sector. However, if they were laid out in a matrix, it would be apparent that the stakeholders' roles are parallel and often interdependent. For example, Federal and State governments as well as providers are advised to create strategic leadership mechanisms for the sector(s) for which they are responsible. All stakeholders are encouraged to collaborate with other organizations and agencies, in addition to carrying out actions that are particular to their domain and expertise (e. g., standards development, advocacy, or research).
The Committee believes, as has been stated, that primary responsibility for coordinating development of the NHII rests with the Federal Government and HHS specifically. This coordination must be both horizontal and vertical — horizontally, across providers, consumers, public health programs, standards development organizations, payers, Government agencies, academic and healthcare institutions, and others, and vertically, across local, State, and national entities. The coordination also must explicitly encompass the personal health, healthcare provider, and population health dimensions rather than focus on any single area.
The Committee recommends that this effort be led by a new, high-level office within HHS. It should have the resources and mandate to coordinate all efforts, internally and externally and in both public and private sectors, and to directly fund strategic crosscutting activities. At the same time, the individual HHS agencies' NHII-related portfolios need to be strengthened and new resources added, under the general coordination of the new office.
Should it accept the recommended leadership role, HHS will need to assess the associated resource needs and integrate them into its budgetary process. Former Assistant Secretary for Health Philip R. Lee, M. D., offered his thinking on funding for the NHII at a regional hearing. 39 In a written supplement to his testimony, he said, "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." f Given the variety of tasks that would be encompassed, such funding would be spread across the White House, existing agencies, nongovernmental organizations, and the new office. This level of commitment is proportional to efforts in Canada and the United Kingdom.
The most important function of funding is to support the new HHS office's pivotal role in coordinating and integrating the activities of the stakeholders and convening them for this purpose. Other HHS activities on the NHII that also need support include information technology research and development; research into effective e-health technologies, applications, practices, and dissemination; investments for information technology deployment in health care and population health; dissemination networks (for the public and professionals) and integrated portals; standards development and implementation; training; data development, management, and integration to implement the vision for 21st-century health statistics; and reimbursement for pilot projects and clinically proven e-health services.
It must be understood that this emphasis on HHS leadership does not suggest a top-down, Government-controlled process. Instead, the recommendations outline a Federal role that promotes the vision and facilitates consensus on direction and process and then helps the collaborators to keep moving as intended, providing support as needed and monitoring progress. The Government is called upon to help set the stage for private innovation, to catalyze change through visioning and standard-setting, and to help build incentives, in addition to performing such traditional governmental functions as providing material support, widening participation and access, and ensuring privacy and confidentiality protections.
Comments in the hearings on the NHII and a review of successful models and best practices in the United States and abroad suggest that several attributes are critical for a collaboration that will build the NHII. In addition to inclusiveness and broad-based participation in decisions, formal mechanisms for reaching compromise on controversial issues will be needed. Stakeholders' motivations vary and sometimes may even conflict; to succeed, the collaboration must account for the full range of interests and motivations. Other important attributes are a clear leadership mandate, an appropriate distribution of responsibility and accountability, and an agreed-upon process and milestones.
While none of the following is a perfect or complete example (and other examples could be cited), three well-documented cases illustrate at least some of these attributes. The first is the Canadian Health Infoway and Information Roadmap, described in Section 4. Those in charge of that multiyear process of consultation, planning, and implementation have gone to considerable lengths to involve multiple stakeholders — providers, consumers, business people, policymakers, and more — at local, provincial, and national levels.
The second example is the National Occupational Research Agenda (NORA) public/ private consensus process used to develop a research agenda for the National Institute for Occupational Safety and Health (NIOSH). 40 Some 500 organizations and individuals outside NIOSH provided input into agenda development, helped identify 21 priorities, and committed themselves to implementing the agenda. Many organizations are using NORA (which stimulated a 133-percent increase in Federal funding in this area) as a model for their own partnership and planning initiatives. Examples of organizations using NORA include the European Agency for Safety and Health at Work, the U. S. Department of Defense, the Japanese National Institute of Industrial Health, the State of Maine, and the Chemical Industry Institute of Toxicology.
The final example of collaboration is the highly decentralized but well-coordinated process used to develop Healthy People 2010, the Nation's third decade-long prevention initiative. Leadership in 28 specific areas was delegated to agencies with primary mandates in those areas who worked closely with relevant professional and voluntary organizations. Regional hearings and online comment opportunities ensured broad input from the general public. The Assistant Secretary for Health provided overall leadership and coordination. Implementation is now equally decentralized, with virtually all States and many localities adapting Healthy People to frame their own health initiatives.
Given stakeholders' varied interests, stages of readiness, and degrees of receptivity to the NHII, the proposed new HHS office will need to use both incentives and requirements to stimulate the development process. In the Committee's view, devising these stimulants should be one of the Federal office's first tasks. Incentives and requirements may be linked as part of a national plan supporting a national health information policy. For example, grants to providers and public health agencies for investment in standardized systems might require that they incorporate standards for sharing personal health information (under strict protocols for de-identification unless mandated by law).
The standardization and administrative simplification process sparked by the 1996 Health Insurance Portability and Accountability Act is an example of this interplay of incentives and requirements. Other incentives might include differential reimbursement to providers who have implemented information systems consistent with NHII information flows, including decision-support tools for providers and patients. Other requirements might include a charge to Federal agencies to produce plans for bringing current programs into consistency with NHII information flows within 5 years.
Three Major Stages To Realize the NHII
The Committee envisions three major stages in the process. The first stage has five major tasks: creating the recommended senior position and lead office within HHS with sufficient authority and funds and building relationships with centers of leadership in HHS and other agencies; fleshing out the vision as a national health information policy and implementation plan; establishing incentives and requirements; launching a comprehensive standards acceleration process; and committing the resources implicit in each of these tasks. Taken together, these actions would demonstrate a strong governmental commitment to the development of the NHII.
The second stage centers on developing and expanding collaboration at national, State, and local levels and with the private sector to complete and confirm the implementation plan. This stage will involve the most extensive and substantive forms of collaboration.
The third stage involves carrying out the implementation plan in all relevant areas of the private sector and all levels and areas of government. This stage will include a feedback loop in which progress is monitored and issues requiring further action are identified.
NCVHS suggests that stage one be completed within 2 years, stage two within 5 years, and stage three within 10 years. Looking to its own role in this process, the Committee expects its responsibilities as HHS's primary external advisor on health information policy to grow more focused as HHS moves into its recommended leadership role. The Committee would welcome annual reports from the Department on its progress toward implementing the recommendations, beginning in 2002. The Committee also anticipates that it will continue to hold periodic hearings to assess NHII activities in the public and private sectors.
Before turning to the recommendations of the National Committee on Vital and Health Statistics, let us review the key messages of this report. The heart of the vision for the NHII is sharing information and knowledge appropriately so it is available to people when they need it to make the best possible health decisions. To serve the Nation's health needs, the NHII must make information available to individuals, healthcare providers, public health agencies, policymakers, and all others whose decisions shape health outcomes. It must serve all individuals and communities equitably; enhanced electronic capability must not be allowed to serve preferentially the segments of the population that are already most advantaged. Better safeguards for privacy, confidentiality, and security are hallmarks of the NHII. The evolution of the NHII is already under way, but so far progress is highly fragmented. Recent events underscore that an effective NHII is not a luxury, but a necessity; it is not a threat to our privacy, but a vital set of resources for preventing and addressing personal and collective health threats. Realizing the potential of the NHII will involve changes in personal, institutional, professional, civic, and governmental practices and in the relationships among these domains. Experts and industry representatives told the NCVHS that the Federal Government has a key role to play in these developments. But the Government cannot act alone; what is needed is a dynamic, nationwide collaborative venture for this purpose. The following recommendations outline a process for bringing that about.
Recommendations for the National Health Information Infrastructure From the National Committee on Vital and Health Statistics
Congress and the White House should make it a priority to develop a comprehensive National Health Information Infrastructure (NHII) for the public and private sectors. Leadership should be vested in the U. S. Department of Health and Human Services (HHS). The NHII leadership should participate in senior executive branch councils, such as the Domestic Policy Council, the National Science and Technology Council, and committees focused on bioterrorism. Legislation and appropriations to support the NHII will be needed. Congress and the White House are encouraged to examine existing and planned initiatives in population health, health care, and consumer health to ensure their consistency with the requirements of a comprehensive NHII and avoid creating future barriers.
The Secretary of Health and Human Services should create a senior position to provide strategic national leadership for the development of the NHII and set the agenda for NHII investments, policymaking, and integration with ongoing health and healthcare activities inside and outside of Government. The position should report directly to the Secretary of HHS and be supported by a separate office with its own budget. At the same time, the specific NHII-related roles and responsibilities of HHS agencies should be enhanced, with appropriately increased budgets, under the strategic oversight of the central NHII office. (See #2 below.) The creation of this office responds to and would address the findings and recommendations of the President's Information Technology Advisory Committee, Panel on Transforming Health Care, and the National Research Council's Committee on Enhancing the Internet for Health Applications. g The recommendations from these reports should be adapted or expanded as needed to encompass the personal health and population health dimensions of the NHII as well as the healthcare provider dimension.
The proposed office, which is envisioned as a policy and coordination office rather than an information technology office, should develop a comprehensive NHII strategic plan that encompasses public-and private-sector health information activities. The plan would be developed in collaboration with key external stakeholders, HHS agencies, and other Federal agencies and promote consistent policies nationally. Internally, it would coordinate and oversee NHII-related policy, program, and technology activities and promote timely action by HHS agencies. The office would promote and facilitate the coordination of activities within HHS related to health information privacy and security. It would support pilot projects through its own funding and encourage support for strategic projects through other funding sources inside and outside the Federal Government. This office should recognize the roles of all key stakeholders, including consumers, and conduct its work through collaborative mechanisms whenever possible. It should seek to build upon existing programs that support the NHII and avoid duplication of activities. Specific responsibilities would include:
The budget of this office should be adequate to support robust convening and coordinating functions. Other funds should be strategically targeted for grants, cost-benefit studies, research and development projects, consensus building on best practices, technical assistance, and the creation of a comprehensive program to accelerate the development of healthcare information standards in the United States.
Other HHS agencies/offices with missions and activities in NHII-related areas should designate an office or individual to participate in NHII strategic planning and ensure coordination within the agency/office and with the central NHII office. The budgets of these agencies/offices should be appropriately increased to support enhanced NHII-related activities in their specific areas, including accelerated standards development. The agencies/offices should ensure that existing and planned activities are consistent with NHII requirements and that their impact on population health is tracked and reported to appropriate data centers.
Congress should provide new or expanded funding for programs that support the personal health, healthcare provider, and population health dimensions individually and jointly, with special attention to areas for which the Federal Government has a leading or exclusive role and areas already mandated by HIPAA. Examples of funding include support for
Congress should supplement HIPAA to address standards issues related to the NHII. A "Health Information Portability and Continuity Act" should provide for the portability of health information across information systems, plans, and providers to ensure continuity of care; promote the adoption of clinical data standards; and promote consumer/ patient control of personal health information.
Congress should pass national laws and identify regulatory responsibilities for overarching issues that apply to the NHII, such as the confidentiality of personal health information, the security of health information systems, reimbursement for clinically necessary and effective electronically delivered health services, and consumer protection for misuses and abuses of health information.
Federal health data agencies should collaborate with State and local government agencies and standards organizations to develop common data reporting formats and standardized methods of transmission of all pertinent health data. These activities should build upon CDC NEDSS, the Health Care Service (837) Data Reporting Guide and upon efforts to develop public health data conceptual models, extending these beyond communicable diseases. This effort also should be coordinated with the United States Health Information Knowledgebase or metadata registry operated by the ANSI Healthcare Informatics Standards Board.
Although the Committee was told that the Federal Government should assume leadership, it also heard that the Federal Government can not build the NHII alone. Its ability to lead and coordinate rests on the assumption that many other stakeholders in the public and private sectors will play key roles within their own areas and will work together.
State and Local Government
Each State should establish a mechanism to provide strategic leadership and coordination of activities related to the NHII. This mechanism, which may be a new office, preferably located in the Office of the Governor, Office of the State Health Officer, or other combined health and human services agency, should have broad oversight of the integration of NHII components into the public health and healthcare programs in their States. The functions of the leadership would be to solicit input from all relevant stakeholders, including consumers, about the development and uses of the NHII and to oversee personal health information privacy issues and activities. Specific responsibilities would include
State and local data agencies should collaborate with Federal agencies and standards organizations to develop common data reporting formats and standardized methods of transmission for all pertinent health data.
State and local health agencies should invest in the collection and analysis of population health data to permit real-time small-area analysis of acute public health problems and to understand health issues related to new or rapidly growing populations and health disparities, and they should combine health data sources for population analysis.
Membership or trade organizations. Each healthcare professional and provider membership and trade organization should establish a mechanism to provide strategic leadership on issues related to NHII development and implementation. The functions of the leadership would include representing the membership or trade organization in meetings convened by HHS and collaborative activities with other stakeholders, promoting internal review of organizational practices and systems for consistency with the NHII and developing timetables for needed revisions and enhancements, and overseeing personal health information privacy issues and activities. Membership and trade organizations should also identify the necessary incentives to promote the full participation of all healthcare providers in the NHII. Representatives of membership and trade organizations should participate actively in the work of standards development organizations and collaborate with Federal representatives in the development of standardized data reporting formats and standardized methods of transmission for population health data.
Healthcare provider organizations. Each individual healthcare provider organization should establish a mechanism to provide strategic leadership and coordination on issues related to NHII development and implementation. The leadership would be responsible for overseeing personal health information privacy and security issues and activities and ensuring that stakeholders from the personal health and population health dimensions can provide appropriate input into plans and decisions. The leadership should identify representatives with diverse backgrounds to participate actively in the work of standards development organizations.
Healthcare Plans and Purchasers
Each healthcare plan and purchaser should establish a mechanism to provide strategic leadership and coordination on issues related to NHII development and implementation. These responsibilities could be assigned to the Chief Information Officers of their organizations. A designated individual should represent the organization in meetings convened by HHS and collaborative activities with other stakeholders and oversee personal health information issues and activities.
Healthcare plans and purchasers should examine their practices and systems for consistency with the NHII and set timetables for needed revisions and enhancements. They should ensure that stakeholders from the personal health and population health dimensions provide appropriate input into NHII plans and decisions.
Healthcare plans and purchasers should identify representatives with diverse backgrounds to participate actively in the work of standards development organizations.
Standards Development Organizations
Standards development organizations should develop new or modified standards as requirements become known.
Standards development organizations should ensure participation by consumer representatives.
Standards development organizations should identify mechanisms to accelerate the standards development process and improve the coordination of standards development across standard-setting bodies and consistent with the direction of the NHII.
Standards development organizations should promote cooperation with standards being developed internationally for population health, patient care, or data-security purposes.
Information Technology Industry
Information technology organizations and trade groups should designate internal representatives to provide strategic leadership and coordination on issues related to NHII development and implementation. Representatives should participate in meetings convened by HHS and collaborative activities with other stakeholders.
The information technology industry should develop and promote cost-effective healthcare software and technologies that comply with national standards so that they can support the appropriate sharing of electronic information for healthcare providers, consumers/ patients, and public health agencies and the improved delivery of clinical and public health services.
Consumer and Patient Advocacy Groups
Consumer and patient advocacy groups should promote policies that encourage the use of electronic technologies in healthcare organizations and by healthcare providers to improve the quality of services, to decrease rates of adverse effects, and to increase access to online/ wireless health information and services for consumers, patients, and clients. They should advocate for privacy protections for consumers, patients, and clients when they exchange health information electronically and for equal access to technology and information by all population groups.
Consumer and patient advocacy groups should participate in NHII-related committees organized by national and State agencies, and by health plan and provider organizations, and in standards development efforts.
Consumer and patient advocacy groups should collaborate with healthcare provider organizations, health plans and purchasers, and public health organizations to promote and facilitate the use of information technologies by healthcare providers, health plans, and public health entities.
Community organizations should help identify community health data needs.
Community organizations should identify necessary partnerships to exchange health data. They also should identify and help reduce barriers to community level collection and exchange of health data.
Community organizations should develop local laypersons' capacities to collect and apply health data to individual and community health improvements.
Community organizations should develop programs that address the "digital divide" and promote equal access to technology and information by all population groups.
Academic and Research Organizations
Academic and research organizations should develop research proposals that integrate health information infrastructure and applications with other types of information infrastructure development (e. g., NGI and Internet2).
Academic and research organizations should develop collaborations with service providers, standards development organizations, and their communities to take innovations from research to implementation.
a Health Level 7 (HL7) provides standards for the exchange, management, and integration of data that support clinical patient care and the management, delivery, and evaluation of healthcare services http://www.hl7.org/. The National Council for Prescription Drug Programs (NCPDP) is a nonprofit American National Standards Institute (ANSI)-accredited standards development organization that creates and promotes data interchange standards for the pharmacy services sector of the healthcare industry http://www.ncpdp.org/. The American Society for Testing and Materials (ASTM) is a developer and provider of voluntary consensus standards, related technical information, and services http://www.astm.org/. Digital Imaging and Communications in Medicine (DICOM) creates and maintains international standards for communication of biomedical diagnostic and therapeutic information http://medical.nema.org/dicom.html. The Institute of Electrical and Electronics Engineers, Inc. (IEEE), is an international membership organization with a portfolio of standards programs http://www.ieee.org/. The Object Management Group (OMG) produces and maintains computer industry specifications for interoperable enterprise applications http://www.omg.org/.
b SNOMED (Systematized Nomenclature of Medicine) is a coded vocabulary that will allow for the full integration of electronic medical record information into a single data structure www.snomed.org. LOINC (Logical Observation Identifier Names and Codes) provides a standard set of universal names and codes for identifying individual laboratory results, clinical observations, and diagnostic study observations http://www.regenstrief.org/loinc. MEDCIN includes more than 175,000 clinical data elements encompassing symptoms, history, physical examination, tests, diagnoses, and therapy http://www.medicomp.com/.
c For example, the International Organization for Standardization, which includes 140 countries http://www.iso.ch/; the Internet Engineering Task Force, which focuses on the Internet architecture and the smooth operation of the Internet http://www.ietf.org/; and W3C (World Wide Web Consortium), which develops common protocols for the Web to promote its evolution and to ensure interoperability http://www.w3.org/.
d Information on the activities of the Public Health Data Standards Consortium is available online at http://www.cdc.gov/nchs/otheract/phdsc/phdsc.htm.
e Examples include the Anacostia/ Ward 8 Child Health Champion Collaborative http://www.epa.gov/reg3esd1/childhealth/special_%20original.htm, West Harlem Environmental Action http://www.weact.org/, and the Long Island Breast Cancer Study Project http://epi.grants.cancer.gov/LIBCSP.
f The $14 billion figure is for what Dr. Lee calls the Health Information and Communication for America Initiative, a broad 10-year initiative that includes statistical data management and enabling steps. See Lee PB, Abramovice BG, and Lee PR. January 2001. Written supplement to the testimony of Dr. Philip R. Lee at the joint hearings of the workgroups on the national health information infrastructure and health statistics for the 21st century, National Committee on Vital and Health Statistics, San Francisco, California, October 30, 2000, p. 9.
gThe recommendations of the NCVHS are consistent with and an expansion of the recommendations contained in two publications: (1) Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies, Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics, and Applications, National Research Council. 2000. Networking health: Prescriptions for the Internet. Washington, DC: National Academy Press. Available online at http://www.nap.edu/books/0309068436/html/ and (2) President's Information Technology Advisory Committee, Panel on Transforming Health Care. Transforming health care through information technology. February 2001. Available online at http://www.itrd.gov/pubs/pitac/pitac-hc-9feb01.pdf. NCVHS has called for the development of the NHII in several of its reports published since the late 1990s. The reports are available on the NCVHS Web site http://www.ncvhs.hhs.gov/reptrecs.htm.
1 Berners-Lee T, Hendler J, and Lassila O. May 2001. The semantic web. Scientific American, 284: 5, p. 43. Available online at http://www.sciam.com/2001/0501issue/0501berners-lee.html.
2 Fox S and Rainie L. November 2000. The online health care revolution: How the Web helps Americans take better care of themselves. Washington, DC: Pew Internet and American Life Project. Available online at http://www.pewinternet.org/reports/toc.asp?Report=26.
3 U. S. Department of Health and Human Services. November 2000. Healthy People 2010. Second edition. With "Understanding and Improving Health" and "Objectives for Improving Health." 2 vols. Washington, DC: U. S. Government Printing Office. Available online at www.health.gov/healthypeople/.
4 Committee on Quality of Health Care in America, Institute of Medicine. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. Available online at http://www.nap.edu/catalog/10027.html.
5 Kohn L, Corrigan J, and Donaldson M, eds. 2000. To err is human: Building a safer health system. Committee on Quality of Health Care in America, Institute of Medicine. Washington, DC: National Academy Press. Available online at http://www.nap.edu/catalog/9728.html.
6 President's Information Technology Advisory Committee, Panel on Transforming Health Care. February 2001. Transforming health care through information technology. National Coordination Office for Information Technology Research and Development. Available online at http://www.itrd.gov/pubs/pitac/pitac-hc-9feb01.pdf.
7 National Committee on Vital and Health Statistics. October 1998. Assuring a health dimension for the national information infrastructure. Available online at http://www.ncvhs.hhs.gov/hii-nii.htm.
8 National Committee on Vital and Health Statistics. July 10, 2000. Joint Hearings of the Workgroups on the National Health Information Infrastructure and Health Statistics for the 21st Century. Proceedings. Chicago, Illinois. Available online at http://www.ncvhs.hhs.gov/000710tr.htm.
9 National Committee on Vital and Health Statistics. October 30, 2000. Joint Hearings of the Workgroups on the National Health Information Infrastructure and Health Statistics for the 21st Century. Proceedings. San Francisco, California. Available online at http://www.ncvhs.hhs.gov/001030tr.htm.
10 National Committee on Vital and Health Statistics. November 20, 2000. Joint Hearings of the Workgroups on the National Health Information Infrastructure and Health Statistics for the 21st Century. Proceedings. Raleigh, North Carolina. Available online at http://www.ncvhs.hhs.gov/001120tr.htm.
11 National Committee on Vital and Health Statistics. January 11, 2001. Joint Hearings of the Workgroups on the National Health Information Infrastructure and Health Statistics for the 21st Century. Proceedings. Washington, DC. Available online at http://www.ncvhs.hhs.gov/010111tr.htm.
12 National Committee on Vital and Health Statistics. July 6, 2000. NCVHS Report to the Secretary on Uniform Standards for Patient Medical Record Information. Available online at http://www.ncvhs.hhs.gov/hipaa000706.pdf.
13 Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies, Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics, and Applications, National Research Council. 2000. Networking health: Prescriptions for the Internet. Washington, DC: National Academy Press. Available online at http://www.nap.edu/books/0309068436/html/.
14 Eng TR. 2001. The eHealth landscape: A terrain map of emerging information and communication technologies in health and health care. Princeton, NJ: The Robert Wood Johnson Foundation. Available online at http://www.rwjf.org/app/rw_%20publications_and_links/publicationsPdfs/eHealth.pdf.
15 Medical Records Institute. September 20, 2001. MRI survey of electronic health records trends and usage. Available online at http://www.medrecinst.com/resources/survey/index.shtml.
16 Superior Consultant Company, Inc., and Dell Computer Corporation. March 2001. Final Report, 12th Annual Healthcare Information and Management Systems Society Leadership Survey. Available online at http://www.superiorconsultant.com/himss/.
17 Holmes BJ, Brown EG, and Twist AE. June 2001. Doctors connect with handhelds. The Forrester Report. Available online at http://www.forrester.com/ER/Research/Report/Summary/0,1338,11449,00.html.
18 American Medical Association. October 8, 2001. amednews. com. Growing medical use of handheld computers reported. Available online at http://www.ama-assn.org/sci-pubs/amnews/pick_01/tesb1008.htm.
19 Department of Commerce, National Telecommunications and Information Administration, TIAPP Grant #06-40- 95124. 1995Ð 98. Tele-conferencing, tele-collaboration, tele-managing and tele-reporting (Tele-CCMR) for cost-effective public health. Available online at http://ntiaotiant2.ntia.doc.gov/top/details.cfm?tiiap_no=953059.
20 U. S. Department of Health and Human Services, Health Resources and Services Administration. 2001. 2001 Report to Congress on Telemedicine. Washington, DC. Available online at http://telehealth.hrsa.gov/pubs/report2001/main.htm.
21 National Committee on Vital and Health Statistics. August 1996. Core Health Data Elements. Available online at http://www.ncvhs.hhs.gov/ncvhsr1.htm.
22 Office of Civil Rights, U. S. Department of Health and Human Services. 2001. National standards to protect the privacy of personal health information. Available online at http://www.hhs.gov/ocr/hipaa.
23 URAC. 2001. Health Web site accreditation. Available online at http://www.urac.org/programs/technologyhws.htm.
24 Krall MA. Winter 1998. Achieving clinician use and acceptance of the electronic medical record. The Permanente Journal. Available online at http://www.kaiserpermanente.org/medicine/permjournal/winter98pj/emr.html.
25 Glaser JP. June 8, 2001. The role of information systems at Partners Healthcare — 2001 Lindberg Lecture. Available online at http://www.cbmi.upmc.edu/symposium.htm.
26 Hospitals and Health Networks. July 2001. The most wired. Available online at http://www.hhnmag.com/asp/ArticleDisplay.asp?ArticleID=15001.
27 Hospitals and Health Networks. July 2001. The big payback. Available online at http://www.hhnmag.com/asp/ArticleDisplay.asp?ArticleID=14903.
28 Department of Veterans Affairs. March 1999. IT vision. Available online at http://www.va.gov/oirm/cio/vision.
29 Centers for Disease Control and Prevention, Public Health Practice Program Office. Health alert network. Available online at www.phppo.cdc.gov/han/index.asp.
30 Centers for Disease Control and Prevention. Integration project: national electronic disease surveillance system. Available online at http://www.cdc.gov/od/hissb/act_int.htm.
31 Deloitte Research. 2000. Winning the loyalty of the e-health consumer: Building an e-business roadmap. Available online at http://www.dc.com/obx/pages.php?Name=HealthResearch.
32 Office of Health and the Information Highway, Health Canada. Canadian health infostructure. Available online at http://www.hc-sc.gc.ca/ohih-bsi/chi_%20ics/index_e.html.
33 Advisory Council on Health Infrastructure, Health Canada. February 1999. Canada health infoway: Paths to better health: final report. Available online at http://www.hc-sc.gc.ca/ohih-bsi/available/pathsvoies/index_e.html.
34 Canadian Institute for Health Information. March 2000. Roadmap initiative: Launching the process. Available online at http://aspe.hhs.gov/sp/nhii/documents/NHIIReport2001/.
35 Sheikh F. June 19, 2001. Savings found online: Health care gets IT boost. Available online at http://www.sierrasys.com/whatsnew/2001_news/healthit.asp.
36 Office of Health and the Information Highway, Health Canada. Health Canada's financial contribution. Available online at http://www.hc-sc.gc.ca/ohih-bsi/chi_ics/finance_e.html.
37 Canadian Institute for Health Information, Board of Directors. March 1Ð 2, 2001. Highlights of the CIHI board meeting. Available online at http://www.cihi.com/weare/brdmar2001.shtml#ROADMAPINITIATIVE UPDATE.
38 NHS Information Authority. January 15, 2001. Building the information core: Implementing the NHS plan. Available online at www.nhsia.nhs.uk/def/pages/info_core/overview.asp.
39 Lee PB, Abramovice BG, and Lee PR. January 2001. Written supplement to the testimony of Dr. Philip R. Lee at the joint hearings of the workgroups on the national health Information infrastructure and health statistics for the 21st century, National Committee on Vital and Health Statistics, San Francisco, California, October 30, 2000.
40 National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention. 2001. NORA fact sheet. NIOSH Pub. No. 2001-101. Available online at http://www.cdc.gov/niosh/01-101.html.