Information for Health: A Strategy for Building the
National Health Information Infrastructure
Report and Recommendations From the National Committee on Vital and Health Statistics
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
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:
- Coordinating the evolution of the NHII and working with all relevant stakeholders in the
public and private sectors to develop a strategic plan that will, among other things, ensure
the interoperability of all elements of the NHII.
- Coordinating HHS spending on NHII-related activities; ensuring that population health,
personal health, and healthcare provider information needs have a high priority in
crosscutting Federal information technology research and development initiatives; and
sponsoring pilot projects relevant to the personal health, healthcare provider, and population
health dimensions that promote effective information flows within and across the dimensions.
- Developing policies and practices to ensure the security and confidentiality of personal health
- Promoting the development of State and local population health information capacities.
- Promoting effective training methods in health informatics for the public and private sectors
and identifying and developing health informatics skills for the Government health work
- Convening stakeholders from the public and private sectors to develop consensus on
priorities and responsibilities for NHII development and implementation; providing an
ongoing forum for discussion, consensus building, and report writing that advances the NHII.
- Reviewing all other Federal roles and responsibilities relevant to the NHII for consistency with
the public interest in realizing the full benefits of the NHII, and establishing timetables for
needed revisions or enhancements; reviewing with other Federal healthcare agencies all
Federal healthcare programs, whether funded directly or indirectly, for consistency with the
public interest in realizing the full benefits of the NHII; and establishing timetables for needed
revisions or enhancements.
- Promoting standards for data and other requirements for the personal/ consumer health
record and the clinical health record in conjunction with other stakeholders.
- Promoting international collaboration in areas such as standards and the quality of health
care and health information.
- Ensuring that all population groups share in the activities and benefits of advances in
information technology and transfer and their applications.
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
- Development of State and local population health information capacities.
- Professional training programs for the Federal, State, and local public health work force, and
for the private healthcare work force, in information technology skills.
- Technology centers that bring together interdisciplinary teams to explore issues related to the
NHII, with an emphasis on activities that link the three dimensions.
- Healthcare providers for investments in interoperable linked systems that support health-related
information flows across plans and providers.
- Federal information technology research and development activities to stimulate research in
health and healthcare applications.
- Pilot projects that integrate data from the healthcare provider and personal health
dimensions into the population health dimension at the State and local levels.
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
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
- Securing funds for State and local health departments to develop their health information
- Reviewing State healthcare programs for consistency with NHII requirements and establishing
timetables for needed revisions or enhancements.
- Reviewing State/ local public health infrastructures for consistency with NHII requirements
and establishing timetables for needed revisions or enhancements.
- Reviewing medical licensing laws and taking action to maximize the extent to which the laws
ensure appropriate reciprocity across State lines.
- Reviewing other State and local laws, regulations, and programs relevant to the NHII and
taking action to ensure consistency with the NHII.
- Developing policies and practices to ensure the security and confidentiality of personal health
- Coordinating NHII-related activities of healthcare providers and plans.
- Fostering pilot projects.
- Providing information about NHII requirements.
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
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
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
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
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