Information for Health: A Strategy for Building the National Health Information Infrastructure

Report and Recommendations From the National Committee on Vital and Health Statistics

1. INTRODUCTION

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
More consistent implementation of clinical practice guidelines
Improved clinical data collection and analysis at the organizational and national level
Portability of patient information across healthcare provider organizations
Improved provider-patient communication
More accurate and accessible patient records

Patient Safety
Fewer drug-drug interactions and medication errors
Automated reminders and alerts
Continuous event monitoring to detect adverse events

Cost
Improved triage to reduce unnecessary office and emergency department visits
Improved home care to reduce nursing home and hospital care
More robust disease management

Efficiency
Reduced paper flow
Faster processing of administrative transactions
Automated scheduling and prescription refills

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.

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