Legal barriers to sharing surveillance data between public health programs in New York city: A case study

Background: State and local laws mandate reporting of specific infectious diseases to health departments, which then use this data, in part, to allocate resources for activities to prevent and control disease. Sharing surveillance data across health department programs allows for better understanding of the overlap between diseases. Integrated services, such as education, screening, and treatment, that address multiple diseases can to save costs and improve population health. While technology has evolved to make it easier to restrict access to data and share data more freely, laws authorizing the collection of data and agency-specific policies may prevent health departments from sharing data internally. Methods: To assess barriers to data sharing, we reviewed New York State and New York City (NYC) laws and NYC Department of Health and Mental Hygiene (DOHMH) agency policies that govern how DOHMH uses HIV, sexually transmitted disease (STDs), tuberculosis, and viral hepatitis surveillance data. Results: We found that reporting and disclosing case information for different diseases came into existence at different times, driven by specific needs, and laws vary in extent to which internal data sharing is permissible. Internal agency policies do not match current data sharing needs, and ensuring the confidentiality of sensitive health information may preclude data sharing. Conclusions: Technology now enables linkage of data in real time and extensive epidemiologic analyses. In some cases, laws prevent this. Jurisdictions wanting to share data may need to conduct similar reviews to identify legal barriers and agency policies that may limit data sharing.