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.