HHS Health Informatics Initiative: Improving Information for Decision-Making

OVERVIEW

HHS has proposed a $20 million initiative in the President's FY 2001 budget dealing with Health Informatics: Improving Information for Decision Making. The ultimate goal of this initiative is to improve patient care and health outcomes through the efficient and effective use of data. The initiative will strengthen the information base for decisionmaking and action in health through critical new crosscutting investment in health informatics approaches and applications.

The initiative will allow HHS to improve integration of the broad range of available health data and information. It will also allow HHS to assume a greater national leadership role in the establishment and adoption of health data standards to improve the uniformity and ease of transmission of health care data while protecting the confidentiality of health information.

The activities included in this cross-cutting initiative build upon informatics-oriented investments proposed by the individual agencies to ensure that HHS realizes the full potential of the new Agency investments. The initiative reflects two general needs for cross-cutting activities:

1. funding to provide cross-cutting strategy, oversight, guidance, and coordination of Department-wide activities related to enhancing information for decision-making, and
2. new and innovative informatics activities that address emerging health information needs – exploratory research and development funds necessary to guide, shape, and amplify results of Agency investments.

The initiative provides an investment of $20 million which will initially be located within the Office of the Secretary (OS) budget, under the direction the Assistant Secretary for Planning and Evaluation (ASPE), in coordination with the HHS Chief Information Officer (CIO).

In total, the Initiative includes nine cross-cutting investment themes that are designed to 1) develop informatics-oriented partnerships with the health care industry, and the research and public health communities, 2) leverage agency health informatics and data investments, and 3) ensure effective Departmental collaboration and coordination on this Initiative.

The crosscutting investments planned in FY 2001 will support the following themes:

• Health Informatics for Decision Making - Coordination Working Group. - Providing oversight and guidance to all of the related Initiative activities, and particularly ensuring that the cross-cutting activities are well-coordinated across the Department is critical to the success of this Initiative. This workgroup will work closely with the HHS Data Council and the HHS CIO. Funding will provide for contract support for planning as well as expert consultation and panels to review and advise on proposed activities, with an emphasis on integrated approaches and strategies.
• Strengthening Health Information Confidentiality and Security. Improving health information systems depends on adequate confidentiality and security protections, an area to which HHS has always been committed. However, as technology provides vastly increased capabilities and benefits, new issues arise concerning how to protect the confidentiality and security of that information. HHS is increasingly looked to for national leadership in these areas.

Accordingly, the Initiative provides support for leadership activities as well as research and development, evaluation and dissemination of cross-cutting approaches, techniques and tools for protecting the confidentiality and security of health information across HHS, and in partnership with industry and the research and public health communities. Examples include the development of standards and tools for disclosure avoidance, and research on methods of encryption, de-identification, and other privacy enhancing technologies.

• Assuring Unified Electronic Access to HHS Data Sources through Informatics. HHS will invest in a range of health informatics approaches and methods to develop unified, user-friendly internet-based access to the wealth of existing health information including:
  1. a comprehensive directory of data systems and sources;
  2. an archive of questionnaires, measures and forms used in health surveys and other collection efforts;
  3. key data for analysis, often via links to source organizations;
  4. consolidated documentation of surveys and sources to help users understand methods and analytic approaches;
  5. analytic tools;
  6. analyzed results and publications with consistent cross-linkages and references to related data sources.

Much of this effort will be internet based, and it will build upon and complement existing Agency activities with links to all Agency Web sites.

• Improving Health Information Systems through Data Standards. Building health information systems involves developing and implementing data standards that can be used across programs and settings. Under HIPAA, HHS was directed to play a national leadership role in the development, adoption and evaluation of national health data standards. Cross-cutting standards activities will provide a sense of permanence, stability and importance to the new HHS role, and will strengthen interagency coordination and health data integration efforts and will promote effective partnerships with industry and the research and public health communities.

  Activities include supporting the development, evaluation and dissemination of health data standards, assuring cross-cutting HHS, government, and private sector participation in the national standards development process. This proposal would also support organization and funding for private and public sector bodies to perform enhancement and ongoing maintenance of clinical vocabularies needed for computer-based patient record systems.

• Promoting State Integrated Information Systems - Demonstration Projects. HHS will fund demonstrations of state-level efforts that apply informatics methods and approaches to link and analytically integrate data from multiple sources including public health, the health care delivery system, administrative data sources such as human services, housing, and non-traditional sources (e.g., criminal justice data).

  The project would replicate and develop further the successes of States that have effectively integrated data to provide a sound information base for a variety of health decision-making. In parallel with steps to standardize and integrate data acquisition systems, the demonstrations will focus on efforts to link data sets at the analytic end using new informatics and statistical technologies and methods such as geocoding and mapping, while assuring confidentiality.

• Integrating Health and Human Services Information. In parallel with efforts to acquire additional information on health and human services issues in ongoing HHS data systems, it is important to invest in efforts to link human services information with existing health data sets to help illuminate the interactions between major Federal/state/local programs such as Medicaid, CHIP, and TANF. Steps include efforts to link surveys to administrative data; to improve analyses of interactions between health and human services programs; to explore integrating human services program-relevant data collections into routine HHS data collections; to explore approaches for using new data sources and methods for understanding the nexus of health and human services; and improved evaluation of the impact of welfare reform on health and well-being of children.

• Forging Informatics Partnerships with the Private Sector to Improve Health Care Delivery System Data. HHS has started working with the American Hospital Association, the American Medical Association, Medical Group Management Association, Healthcare Financial Management Association, the American Association of Health Plans, and others to identify gaps in our information on the health care delivery system, and to identify innovative public private partnership activities using informatics-based approaches to close these gaps. The group is developing recommendations on how to implement these activities. This investment would provide new funding to implement these partnerships.

• Improving Information to Measure and Track Race Discrimination in Health Care. HHS is participating in a White House initiative to improve measurement and tracking of race discrimination in several key sectors of the economy, including health care. This project will assess what administrative data sets can be used to identify potential racial discrimination in health services and will develop new informatics oriented methods to assess discrimination in health care. New methodologies will address how best to obtain the data, how the data should be analyzed and used, and what research is necessary. HHS will assess whether existing data systems can be enhanced to incorporate measures of discrimination in health care settings or whether new data systems should be developed.

• Enhancing Inter-Agency Health Risk Assessment and Outcomes Monitoring. This project would facilitate interagency collaboration across HHS to support the outcomes monitoring, health risk assessment and health protection responsibilities of several HHS agencies, including FDA, CDC, and HRSA. Activities will focus on developing uniform approaches, common data sources, better linkages across complimentary systems, and integration and dissemination of information deriving from linked information systems.

Rationale for the Budget Request

A broad array of stakeholders, including health care consumers, providers and payers, Federal, State, and local policy-makers, and the public health workforce has critical needs for comprehensive, coordinated, and accessible health information. Health decision-making requires information spanning a range of sources from the local to the national level and covering a spectrum of core areas such as health care financing, health delivery systems, public health surveillance and health care quality, outcomes and effectiveness. Sound information is essential for effective public health action in response to important threats, constructive program evaluation, quality improvement, individual choices in selecting care, and assessment and management of new medical technologies. HHS plays an essential role in creating health information for decision-making, by developing and promoting strong health information systems, as a partner with other health informatics entities, and as a leader in health information and informatics policy.

The Health Informatics Initiative encompasses a powerful set of crosscutting and agency specific investments in informatics and information systems. The initiative includes HHS efforts aimed at building the next generation of health information systems, developing, adopting and implementing national data standards, assuring secure electronic transmission of health information, strengthening health information confidentiality protection, enhancing the capacity of federal, State and local partners to participate in the next generation health information systems, promoting secure and confidential electronic data interchange within the public health and health care systems, providing access to relevant health data and information, and developing improved methods and tools.

The Initiative also creates essential cross-cutting investments that build on and amplify the Agency proposals, and ensure that HHS's wealth of health information and information systems resources are coordinated and prioritized to enable HHS to enhance its role as a leader in the development, use, and dissemination of health information. All IT investments in this Initiative will be developed in accordance with IT capital planning principles, in compliance with the Clinger-Cohen Act, and in consultation with the Agency Chief Information Officer and reviewed by the Agency Information Technology Investment Review Board.

As we begin the new century, our efforts to solve pressing public health and health care problems will greatly benefit from the availability of essential and accessible health information, and the enhanced benefits in efficiency and effectiveness that health information technology can bring to the health sector. At the Federal level, and with State and local partners and the private sector, HHS has a crucial role to play in helping the nation better address its health information needs. The Initiative provides crucial health informatics investments to ensure that we have the right information and that we use it effectively to improve the health of the Nation.