Overview

Sound information is essential to the Department of Health and Human Services’ (HHS) mission of enhancing the health and well-being of the population by providing for effective health and human services and by fostering sustained advances in the sciences underlying medicine, public health, and social services.  For virtually every HHS strategic goal and program mission, reliable and readily available information is necessary for planning and decision-making.  In addition, the increasing reliance on program accountability requires that we develop and maintain significant amounts of performance information to determine whether our programs are succeeding in their mission. 

Accordingly, 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.  In addition, HHS is playing a national leadership and convener role to promote and accelerate the development of the National Electronic Health Information Infrastructure (NHII), and to encourage health and human services applications in that framework. 

A number of significant improvements have been made in HHS data systems.  However, new needs are arising and a number of data gaps remain.  As a result, the Department continues to pursue a number of steps designed to address key data needs, develop a coordinated HHS wide strategy on data issues, and strengthen 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 identify and close current information gaps and build information systems for the future commensurate with priorities and available resources.

To facilitate its work, the Council has established a Data Strategy Work Group to identify current and emerging needs for data on a continuing basis, assess current HHS data capabilities to address these needs, develop recommendations for data priorities and review budget investment requests for data from a collective, Department-wide perspective to address those priorities.  In addition to program-specific data, the Work Group identifies crosscutting departmental data needs as part of an HHS data strategy and coordinates with the HHS Research Coordination Council on research related data issues.  As a result of its continuing reviews, the Work Group has identified the following continuing critical data needs in relationship to HHS strategic goals:

• data for monitoring the health status and social and economic well being of the overall population and sub-populations, and for assessing progress towards national health and human services objectives,  including data on race and ethnic groups, persons with disabilities, and data by gender and other populations with special health and human services needs (Goals 1, 3, 6, and 7)
• data for assessing the impact of policies and programs on the health and well being of families and individuals at the state level (Goals 1, 2, 3, 6, and 7)
• data for measuring access to health care and improving the safety, quality, and effectiveness of health care (Goals 3 and 5)
• data for understanding the changes occurring in the delivery and organization of health care and human services (Goals 3 and 5)
• data for measuring program performance (Goal 8)
• data to support national public health protection, emergency health preparedness and response (Goal 2)

Improving Data on health status and the social and economic well being of Populations and sub-populations

A wide variety of statistical information is needed to monitor the health status and social and economic well being of individuals, families and communities, to identify and address threats to that health and well being, and to assess progress on HHS initiatives and strategic objectives.  As a result, HHS supports a number of data systems that provide reliable and timely statistical information on these topics.  These HHS core data and statistical systems provide cross-cutting support to the policy and program initiatives of the Secretary and agencies, allow HHS to set strategic objectives, manage and evaluate programs, and maintain accountability, and often represent the basic building blocks in the assessment of the nation’s health and well being. 

Despite major advances in longevity, health status and 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. 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 United 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.  The HHS strategy includes 1) use of the OMB standards for collecting information on race and ethnicity in all HHS data collections, 2) oversampling of minority populations in national surveys where feasible and cost effective, 3) targeted studies of special populations, and 4) public use data access policies and opportunities to promote the widest availability and use of the data that are collected.  On the recommendation of the Data Council, HHS has adopted 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, and a number of special studies are underway that focus on racial and ethnic minority populations. The Data Council’s Working Group on Race and Ethnicity Data has completed a review of race and ethnicity data needs and developed a set of recommendations for moving forward.  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 also is funding a Congressionally mandated study by an expert panel at the National Academy of Sciences on the adequacy of race and ethnicity data in health and human services. In addition, HHS has supported a review and synthesis of the literature on measures of race discrimination in health care, with approaches for improving both the measures themselves and the resulting data collected.

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 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 individuals, families and communities 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.  While there has been some progress, most current surveys have very limited ability 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 one component of the HHS data strategy.

Data to Understand Changes in the Delivery and Organization of Health Care and human services

Major changes in the health care sector and the human services system continue to occur at a more rapid pace than the Department’s ability to either describe them or systematically 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 to identify health care system data needs, including the needs for data related to health plans, providers and health resources supply and demand.  The group is evaluating current data availability and opportunities for improvement including the increased use of administrative data for research and statistical analytical purposes.

Data to Measure and Improve Access to Care and the Safety, Quality, and Effectiveness of Health Care

Improving access to health care and assuring the quality and safety of health care are major concerns and objectives of the Department.  While significant progress has been made to collect and improve access and 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 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.

Data to support public health protection, emergency preparedness and response

Enhancing the ability of the nation’s health care system to effectively respond to bioterrorism and other public health challenges is a major HHS goal. Progress will involve building the capacity of the health care system to prepare for and respond to public health threats, especially bioterrorism, and ensuring the safety of food, drugs, biological products and medical devices.  In many aspects, these functions rely to a large extent on the same data sources, data systems and information infrastructure that the health care system and the public health system rely on in general. 

HHS is taking a number of steps with the health industry and the public health community to develop a common vision for the national health information infrastructure that will use a national, data standards based framework to support improvements in both public health data and clinical data and information to improve health, enhance the quality and safety of health care and support public health preparedness.  In addition, HHS is exploring how enhancements could be made to current and planned data systems relating to health care providers to assess and monitor emergency preparedness and readiness.

Privacy and confidentiality

The Department has a longstanding commitment to carrying out its collection and use of data with privacy  and confidentiality 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 of 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, as required, its contractors receive is protected by legal controls, most particularly the Privacy Act of 1974. Additionally in some instances information in our programs is protected by special federal research and statistical confidentiality statutes similar to the Census Bureau statutes for protecting information. 

In addition, HHS has issued 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.  The regulation applies to health care providers that transmit data electronically, health plans, and health care information clearinghouses.  It gives individuals rights with respect to their records, constrains record holders in their use and disclosure of personal health information, and requires record holders to have safeguards for the information.

Next Steps

HHS will continue to improve its data to support strategic goals and objectives. The HHS Data Council will continue to serve as the HHS focal point for promoting a coordinated, “One HHS” approach to data collection planning and investments across the Department.  The Council will continue to identify major data gaps from a collective, HHS wide perspective, develop priorities and recommendations and coordinated approaches and strategies for addressing data needs commensurate with available resources.  The Council has updated its Directory of HHS Data and Statistical Resources, a web based gateway for user-friendly access to existing HHS data and statistical resources on the web. The goals of these efforts are to:

• Encourage HHS-wide communication and planning for data collection, analysis, and dissemination from a collective, department-wide perspective;
• Address interagency and departmental data needs in a coordinated fashion;
• Promote coordination and cost efficiencies in addressing interagency data needs and issues;
• Identify potential duplication of effort at an early stage and assure cost effective approaches to data collection; and
• Increase user-friendly access to major HHS data and statistical resources.

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