HHS Data Council: Introduction

Purpose of the HHS Data Council:

The HHS Data Council is the principal, senior internal departmental forum and advisory body to the Secretary on health and human services data policy. The Council coordinates health and human services data collection and analysis activities in HHS, including an integrated data collection strategy as well as coordination of health data standards and privacy policy. HHS has taken a number of steps to address key data needs, promote a coordinated HHS wide strategy on data issues, and strengthen the Department's ability to work in collaboration with private sector entities, State and local governments, and other partners.

HHS plays an essential role in creating health and human services data and information for decision-making by supporting strong data collection, analysis and dissemination systems and by collaborating as a partner with other health and human services entities in the public and private sectors on common data interests. In addition, HHS plays a national leadership role in health and human services information policy, including national data standards, privacy policy, and national health information infrastructure issues.

Data Council Membership:

The HHS Data Council consists of senior level officials designated by their Agency and Staff office Heads, The Director of the National Center for Health Statistics, and the HHS Privacy Advocate/Expert. It is co-chaired by the Assistant Secretary for Planning and Evaluation on a permanent basis and the Head of an Operating Division on a rotating basis. The current cochair is the Agency for Healthcare Research and Quality. ASPE provides executive secretariat and coordinates the activities of working groups of the Council. Members speak for their principals on data policy issues. The Council operates by developing consensus where possible.

List of Data Council Members and Staff Contacts

Data Council Agenda:

  • Advise the Secretary and HHS leadership on data and statistical policy and privacy issues, and provide a focal point in HHS for consideration of data policy and privacy issues.
  • Develop and oversee Department wide data collection strategy, including coordination and integration of surveys.
  • Review proposed data collection investments from the collective, departmentwide perspective to ensure that such investments address Administration and Secretarial priorities, promote coordination and efficiencies in data planning, and meet critical interagency data needs in a coordinated and integrated fashion.
  • Provide general oversight of surveys and general statistical analysis.
  • Work toward consensus on data standards and privacy issues. (Previously the Council served as the initial HHS focal point for implementation of health data standards and health information privacy provisions of the Health Insurance Portability and Accountability Act of 1996.)
  • Serve as focal point within HHS for relationships with the National Committee on Vital and Health Statistics (NCVHS).
  • Respond to data standards and privacy issues presented by NCVHS and other groups.

Current Activities

The Council is currently focusing its efforts in several priority areas:

  • HHS data collection strategy, priorities and data budget review.
  • Internal and external HHS-wide policy coordination in data policy.
  • Data improvement initiatives in prescription drug data, health insurance data, state data, income and asset data and race and ethnicity data.
  • Privacy and confidentiality issues in health and human services data.
  • Data collection standards initiatives.
  • Focal point for relationships with the NCVHS.
  • Data aspects of national health information infrastructure issues.

Data Council Working Groups:

The Council meets monthly. Much of the Council's work is performed by standing and ad hoc interagency staff committees and working groups. These groups are coordinated by HHS data policy staff in ASPE, who also provide the Executive Secretariat for the Council.

  1. Data Strategy Committee
  2. Privacy Committee
  3. HHS Committee on Health Data Standards
  4. Working Group on Racial and Ethnic Data

Data Council Products:

The Data Council's long-term agenda is being implemented by staff members who flesh out issues for the working groups to refine and bring to the Data Council for modification and/or approval. Documents relating to their specific subject areas will be found under the working group web pages (above). Final recommendations, policies, and documents from the Data Council are then sent to the Secretary of HHS and/or made available for general distribution and implementation by the appropriate agencies.

  • Metadirectory of HHS Data Resources
  • CONFIDENTIALITY OF INDIVIDUALLY-IDENTIFIABLE HEALTH INFORMATION Recommendations of the Secretary of Health and Human Services, September 11, 1997
  • Privacy and Health Research, May 1997
  • Charter for the National Committee on Vital and Health Statistics (NCVHS)
  • Press Release including new Membership of the NCVHS
  • Interim Data Council Report to the Vice President
  • Status Report to the Vice President on Enhanced Health Information for Consumers
  • HHS Research Initiative Regarding Transformations in Health and Human Services: Report of the Working Group
  • HHS Policy for Changing the Population Standard for Age Adjusting Death Rates
  • Inclusion Policy for Race and Ethnicity Data,October 1997
  • Improving the Collection and Use of Racial and Ethnic Data in HHS , December 1999
  • Other Data Council Approved Documents

Other Links:

Other documents and web sites which are thought by the Data Council to be useful and related generally to the Data Council agenda are listed without implying recommendation, approval, or endorsement.