Sound information is essential to the Department of Health and Human Services' (HHS) mission of enhancing the health and well-being of the population. For virtually every HHS strategic goal, whether providing for effective health and human services or fostering sustained advances in medicine and public health, reliable and readily available information is necessary for planning and decision making. In addition, the growing emphasis on program accountability requires that we maintain significant amounts of performance information to determine whether our programs are succeeding in their mission.
The Department plays an essential role in creating data and information for decision-making, both as a direct producer and user of data and as a partner with other health and human service entities and governmental agencies. A number of significant improvements have been made in HHS data systems. However, new needs are arising and a number of critical data gaps remain. As a result, the Department has taken a number of steps designed to address key data needs, develop a coordinated HHS wide strategy on data issues, and strengthened the Department's ability to work in collaboration with state and local governments, health and human service organizations, and the research and public health communities.
A STRATEGIC PERSPECTIVE
The HHS Data Council is the principal internal advisory body to the Secretary of Health and Human Services on health and human services data policy. The Council serves as a department-wide forum for data issues and undertakes activities to close current information gaps and build information systems for the future.
To facilitate its work, the Council has established a Data Strategy Work Group to identify current and emerging needs for data, assess current HHS data capabilities to address these needs, and develop recommendations for a multi-year data strategy. In addition to program-specific data, the Work Group has identified a number of crosscutting data needs and is including these in the development of the HHS data strategy. The Work Group identified six critical data needs:
better data on populations and sub-populations, including data on race and ethnic groups, persons with disabilities, and data by gender and other special populations.
data for assessing the impact of policies and programs on the health and well-being of families and individuals at the state level.
data for measuring and improving the safety, quality, and effectiveness of health care.
data for understanding the changes occurring in the delivery and organization of health care.
data for monitoring the health and well-being of the population and assessing progress toward national health objectives identified in Healthy People 2010.
data for measuring program performance.
IMPROVING DATA ON POPULATIONS AND SUB-POPULATIONS
Despite major advances in health care in the United States, significant disparities persist in key health indicators across all racial and ethnic groups. Similar disproportionate health risks may exist for other populations, such as gay, lesbian, and bisexual youths and adults. The elimination of these disparities is a major focus of HHS initiatives.
The Department's ability to identify disparities, understand their causes, and measure progress toward their elimination is limited because of data availability. With few exceptions, existing surveys do not provide adequate information at the national level on minority and other special populations in the Unites States. Information on minority sub-populations is extremely limited. Consequently, even when information is available on minority populations, such as Hispanics or Asians, it often masks significant variations in health and well-being among specific subgroups, such as Mexican American versus Cuban populations.
HHS is taking steps to improve data on minority and ethnic populations and sub-populations. On the recommendation of the Data Council, the Secretary has issued a policy requiring the inclusion of standardized information on race and ethnicity in Department-sponsored data collection efforts. A number of HHS surveys now over-sample some minority populations. A Working Group on Race and Ethnicity Data completed a review of race and ethnicity data needs and developed a set of recommendations for moving forward that are under consideration by the Data Council. Also, HHS is in the process of assessing the current capabilities of Department surveys to provide data on minority populations and sub-populations, including innovative analytical approaches. HHS will be encouraging the collection, appropriate use, and reporting of racial, ethnic, primary language, and gender data by recipients of HHS funding.
In addition, HHS is supporting a review and synthesis of the literature on measures of race discrimination in health care, with recommendations for improving both the measures themselves and the resulting data collected. The Department is supporting a similar research review and syntheses relating to information on sexual orientation in HHS health and social surveys and research.
STATE-LEVEL DATA TO ASSESS THE IMPACT OF POLICIES AND PROGRAMS ON THE HEALTH AND WELL-BEING OF FAMILIES AND INDIVIDUALS
While a number of political, market and technological forces continue to transform the nation's health and human services systems, the Department's ability to describe and assess the impact of those changes on families and individuals is limited. Many of the changes in the health and human services systems have their impact at the state level and in local and regional markets, yet HHS has limited capacity to assess their effects. Current surveys are not able to identify and monitor key trends in health and well-being, health insurance coverage, access, utilization, welfare participation, and other issues at the state level, where key health and human services policies and decisions are made. The Data Council is currently considering how to address the need for state-level data as part of the development of the Department's data strategy.
DATA TO UNDERSTAND CHANGES IN THE DELIVERY AND ORGANIZATION OF HEALTH CARE
Major changes in the health care system are occurring more quickly than the Department is able to either describe or assess their impact. In addition, because of proprietary concerns, traditional sources of data on the health system are disappearing. To address these issues, HHS has established an interagency working group. The working group is identifying health care data needs, including the needs for data related to health plans, providers, and supply and demand. The group is evaluating current data availability and opportunities for improvement. This effort is part of the Data Council's data strategy development process.
DATA TO MEASURE AND IMPROVE THE SAFETY, QUALITY, AND EFFECTIVENESS OF HEALTH CARE
The policy and market mechanisms that helped control health care costs are now causing concern about the quality of care that may have resulted. Assuring the quality and safety of health care is a major concern and objective of the Department. While significant progress has been made to collect and improve quality data, additional improvements are needed. Therefore, a number of data enhancements currently are under consideration within the Department to ensure that HHS can fulfill its leadership role.
DATA TO MONITOR HEALTH AND WELL-BEING AND ASSESS PROGRESS TOWARD NATIONAL HEALTH OBJECTIVES
A variety of information is needed to monitor health status, identify threats to health, and assess progress toward Healthy People 2010, the health objectives for the United States. These measures have become basic building blocks in the assessment of the nation's health and well-being. Healthy People 2010, the health agenda for the nation, is an established national program that is widely used by the public health community. The Healthy People 2010 initiative reflects national consensus about the important measures of health behaviors, health risks, and health services. HHS uses the initiative to guide some of its data development efforts and address the health needs of the country. Healthy People 2010 builds on the data investments made in the 1990s (e.g., an expanded National Health Information System and new surveys such as the Centers for Disease Control and Prevention School Health Program and Practices Survey). The initiative uses this information for national baselines from which ten-year targets have been established.
However, critical gaps in existing health data systems are evident and are mirrored in the Healthy People 2010 framework. These include reliable data for some of the nation's most vulnerable population groups (e.g., people with low income, Native Americans, Native Hawaiians and other Pacific Islanders, and persons with disabilities). Planning and activities are underway in the Department to identify and evaluate approaches for addressing these data gaps.
DATA TO MEASURE PROGRAM PERFORMANCE
The advent of the Government Performance and Results Act (GPRA) has focused attention on the need for data to measure whether HHS programs and activities are achieving intended results. This is a reflection of a broader shift in thinking toward accountability, results, outcomes, and evidence-based decisions for public programs. Accordingly, HHS agencies are in the process of assessing their current capacity for program performance data and identifying future needs. In addition, agencies are working with their service delivery partners to promote and help develop data systems for measuring program results. Strategies for a more systematic and coordinated approach to data needs across HHS are under consideration, including the potential for sharing common data resources to enhance performance measurement.
The Data Council (discussed above) has a Privacy Committee which serves as a focus for the Council's activities, analyses, and decisions with respect to privacy.
The Department carries out its collection and use of data with privacy as a fundamental consideration. HHS participates in the development and use of data and information to carry out its programs and functions with a focus on protecting the confidentiality of that information. Indeed, HHS has a long tradition and commitment to the fair, respectful, and confidential treatment of the information that is entrusted to it in the performance of its functions.
Identifiable information that the Department and its contractors receive is protected by legal controls, most particularly the Privacy Act of 1974, and additionally in some instances by special Federal research and statistical confidentiality statutes similar to the Census Bureau statutes for protecting information. Additionally, the Department is currently preparing a major health information confidentiality regulation. Under the Administrative Simplification provisions of the Health Insurance Portability and Accountability Act of 1996, HHS was directed to issue a final regulation with national standards to protect the privacy and security of individually-identifiable health information. A notice of proposed rulemaking was issued in November 1999, and work is proceeding on a final rule. The regulation will apply to health care providers that transmit data electronically, health plans, and health care information clearinghouses. It will give individuals rights with respect to their records, will constrain record holders in their use and disclosure of personal health information, and will require record holders to have safeguards for the information.
Having identified the six critical data needs outlined above, the next step is to identify and prioritize specific data gaps and develop strategies to address those gaps. We expect recommendations on a strategy for the six data areas to be completed in the fall, 2000, and they will be presented to the Data Council. The Council subsequently will evaluate the recommendations and formulate an implementation plan. The plan may involve, as appropriate, meetings with states and other partners to forge implementation partnerships, technical assistance to a variety of organizations involved in data collection, development of new data standards, budget requests for data enhancements, modifications to administrative, regulatory, and programmatic data reporting systems, and improvements to data analysis and dissemination activities.