Review of Federal Access Policies for National Syndromic Surveillance Program Data: Findings and Implementation Strategies
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The current National Syndromic Surveillance Program (NSSP) data use agreements (DUAs) prohibit CDC from conducting surveillance at the state or local level. Instead, default access for CDC NSSP staff is limited to HHS region-level access. This limits CDC to a simplified national/regional database that does not have the full suite of data variables available on the NSSP platform. Under these prohibitions, CDC cannot use social vulnerability index strata and other variables unless granted permission from each site. This policy approach prevents nationwide monitoring of unidentified emerging health threats or health disparity trends until they become prominent at a multi-state level. The Council of State and Territorial Epidemiologists (CSTE), in collaboration with the CDC and Texas A&M University School of Public Health brought together STLT epidemiologists in leadership positions or with decision-making power to collaborate and provide input to develop a report on considerations and implementation strategies regarding revisions to permitted federal NSSP data access. The Workgroup identified a number of concerns about expanded federal access to state NSSP data. The highest-rated concerns were: (1) the federal government independently sharing data or initiating public health action without notifying states, (2) data misinterpretation, (3) adequacy of and adherence to data sharing rules, (4) privacy and confidentiality concerns, (5), and Freedom of Information Act issues. The implementation strategies below are intended to address these concerns and are the result of the synthesis of the substantial data and findings described in the final report. Public health ethical principles, as well as considerations of reciprocity, trust, transparency, and accountability, were given consideration and guided the recommendations below when evidence diverged or perspectives on an issue differed. IMPLEMENTATION STRATEGIES 1)Create communication protocols between CDC and STLT governments a)Sub-implementation strategies include standard communication modes, expectations, and state notification protocols of federal dissemination or data use. 2)Implement a framework for federal-STLT collaborations a)Sub-implementation strategies include involving STLT partners in methodological development and data analysis, standardizing federal data requests, and a STLT right to have their data excluded from public disseminations when the exclusion is based on legal, scientific, or public health grounds 3)Establish rules and restrictions for federal publication of NSSP data 4)Permit limited CDC NSSP staff to access state NSSP data to provide supplementary surveillance support subject to reasonable policy guardrails and limitations a)Sub-implementation strategies include limiting generalized federal access to STLT NSSP data to core CDC NSSP staff, and limiting routine federal use of STLT NSSP data to activities intended to detect or monitor interjurisdictional public health threats or to enable federal public health support activities. 5)The federal government should minimize additional burdens on STLT governments and provide additional state and local funding as needed. 6)Create a STLT NSSP governance group guided by principles of public health ethics 7)Create processes for emergency federal NSSP access and use. 8)Establish audit and documentation process for NSSP data access and analysis 9)Require all federal users of NSSP data below the state level to sign the NSSP DUA 10)Federal and STLT NSSP partners should clarify breach responsibility 11)Create standards for removing access from federal users 12)Require training on NSSP rules, DUA obligations, and the code of conduct 13)Clarify and communicate DUA rights, duties, and restrictions 14)Clarify FOIA policy for syndromic surveillance data 15)Prohibit the use or release of STLT NSSP data to take enforcement action against NSSP-contributing facilities or data subjects 16)Investigate tribal issues related to increased federal access to STLT NSSP data and the potential impact on tribal communities CONCLUSION Consistently, trust and relationships are the most significant reported barriers and challenges to public health data sharing at all levels. Consequently, many of these strategies are intended to provide a constructive foundation for building trusting relationships between the federal government and state and local NSSP participants. Notably, many strategies are prudent even in the absence of enhanced federal access to STLT NSSP data. For example, the strategies to improve STLT/federal communication and collaboration will substantially improve national syndromic surveillance activities. Moreover, several strategies are likely to facilitate stronger trusting relationships and more productive and efficient public health collaborations. Consequently, these strategies should not be considered an all-or-nothing package.
