Information for Health: A Strategy for Building the National Health Information Infrastructure. Recommendations for the National Health Information Infrastructure From the National Committee on Vital and Health Statistics

11/15/2001

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.

FEDERAL GOVERNMENT

1.

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 dimension.

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 information.
  • 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 force.
  • 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.
 

2.

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.
 

3.

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 information.

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.
 

4.

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.
 

OTHER STAKEHOLDERS

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

1.

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 capacities.
  • 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 information.
  • Coordinating NHII-related activities of healthcare providers and plans.
  • Fostering pilot projects.
  • Providing information about NHII requirements.

 

2.

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.

3.

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.

 

Healthcare Providers

  1. 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.

  2. 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

  1. 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 activities.

  2. 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.

  3. Healthcare plans and purchasers should identify representatives with diverse backgrounds to participate actively in the work of standards development organizations.

Standards Development Organizations

  1. Standards development organizations should develop new or modified standards as requirements become known.

  2. Standards development organizations should ensure participation by consumer representatives.

  3. 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.

  4. Standards development organizations should promote cooperation with standards being developed internationally for population health, patient care, or data-security purposes.

Information Technology Industry

  1. 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.

  2. 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

  1. 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.

  2. 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 development efforts.

  3. 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

  1. Community organizations should help identify community health data needs.

  2. 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 data.

  3. Community organizations should develop local laypersons' capacities to collect and apply health data to individual and community health improvements.

  4. 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

  1. 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).

  2. Academic and research organizations should develop collaborations with service providers, standards development organizations, and their communities to take innovations from research to implementation.

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