Information for Health: A Strategy for Building the National Health Information Infrastructure. Disparate Responsibilites Create a Fragmented Environment

11/15/2001

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.

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