Information for Health: A Strategy for Building the National Health Information Infrastructure. Definition and Key Elements

11/15/2001

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:

  • Values

    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.

  • Privacy

    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

    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

  • Technology

    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.

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