Discussion of Issues Involved in Updating the CDC Policy and Procedures for Re-Release and Sharing of Jurisdiction-Provided Data in the National Notifiable Diseases Surveillance System

Brief Summary
The CDC’s Division of Health Informatics and Surveillance (DHIS) receives nationally notifiable diseases data from reporting jurisdictions, at which time the data become Federal records and are subject to Federal laws and regulations. DHIS’s sharing of state-provided data is guided by the 2003 CDC policy on releasing and sharing data and the 2005 CDC-CSTE Intergovernmental Data Release Guidelines Working Group report. The CDC-CSTE guidelines recognized the need to share data as broadly as possible with the public, health practitioners and researchers in order to advance public health and they provided guidance on policies and procedures to protect private, confidential information when data are released or shared. Since 2005, the data elements provided to CDC for NNDSS have increased and there have been changes in both issues and methods for protecting data. DHIS is in the process of updating the data release/data sharing guidelines and procedures for NNDSS data that DHIS publishes, releases in public use data sets, e.g., through WONDER, and shares through restricted access agreements. DHIS would like to discuss with CSTE members a number of specific issues that need to be addressed in the updated policy. These issues include, but are not limited to, the following: 1. How to best implement data use agreements with reporting jurisdictions and to identify representatives from each jurisdiction with whom to make the agreement. 2. What data elements are published, publicly released or shared. 3. Whether, with whom and how to share more detailed data sets through restricted access agreements. 4. Specific methods to protect confidentiality for published, for released and for shared data: a. removal of sensitive information, b. removal of identifiers, c. restricting data on combinations of indirect identifiers, and d. suppression or withholding of data based on unit suppression rules (e.g., numbers of cases or numbers of individuals in population numerators, defined geographically, demographically, or temporally). 5. How to best assure human subjects protection when data are shared for research. 6. What information to provide to jurisdictions on data release and data sharing and how. 7. What process to use to provide jurisdictions opportunity to review and comment on a “review draft” of the DHIS NNDSS data release/data sharing policy? Handouts with examples related to these issues will be provided at the session in order to make to discussion more specific and applied.