Syphilis surveillance: A review of data systems and gaps during an epidemic

Le résumé fourni par la source

Background and Aim: Infectious syphilis notifications in Australia have more than doubled in the last decade, reaching 5866 cases in 2024. Aboriginal and Torres Strait Islander notification rates are five times higher compared with non-Indigenous Australians. Between 2016-2024, 99 cases of congenital syphilis resulted in 33 infant deaths. In August 2025, syphilis was declared a Communicable Disease Incident of National Significance (CDINS). Syphilis surveillance remains fragmented across state and territory systems, with only a fraction of data reported to the National Notifiable Diseases Surveillance System. This study maps data variations to inform nationally consistent surveillance requirements. Methods and Analysis: We identified syphilis surveillance systems through literature review, document analysis and stakeholder consultation. We systematically analysed 15 syphilis surveillance databases across eight Australian states and territories, plus national and New Zealand systems. Variables were extracted using a structured matrix and categorized through an iterative process using the READ approach. Systems were compared examining both data content (which variables are collected) and process (how data are collected and managed). Outcomes: Substantial heterogeneity exists across jurisdictions, with variation seen across sexual identity and details of sexual encounters, social vulnerability and partner notification. Operational challenges include reliance on fax, mail, or phone reporting, creating data entry delays. These variations can hinder capacity to identify transmission patterns and target interventions to particular populations. Furthermore, absence of standardised identifiers may preclude data linkage with other national datasets. Conclusion and Future Actions: While Australia's National Notifiable Diseases Surveillance System provides minimum core data, jurisdictions independently collect substantially more detailed variables though in inconsistent ways. Harmonising surveillance data represents one critical component of a multi-pronged response to this CDINS, alongside clinical, public health, and social interventions. This study provides a first systematic, cross-jurisdictional documentation of syphilis surveillance data variables in Australia, identifying specific areas where harmonisation could improve comparability, and support more effective public health action. Aboriginal and Torres Strait Islander Governance and Indigenous Data Sovereignty: This research operates under a tailored, formal Aboriginal and Torres Strait Islander governance structure, chaired by Associate Professor Lisa Whop, to ensure cultural safety and Indigenous data sovereignty principles throughout all research phases. Our governance group includes Aboriginal and Torres Strait Islander co-investigators and representatives from Community Controlled Health Organisations, meeting bi-annually with oversight of research design, stakeholder engagement, data interpretation, and dissemination strategies. We apply the Maiam nayri Wingara Indigenous Data Sovereignty Collective principles, emphasising Aboriginal and Torres Strait Islander Peoples' rights to govern the collection, ownership, and application of their own data. This is critical given syphilis disproportionately affects Aboriginal and Torres Strait Islander communities. Current surveillance systems uniformly fail Indigenous Data Sovereignty principles. All jurisdictional databases are government-controlled across the entire data ecosystem—from collection through storage, analysis, and dissemination. Aboriginal Community Controlled Health Organisations face laborious, time-consuming processes to access aggregated data about their own communities. No jurisdiction provides Aboriginal and Torres Strait Islander Peoples meaningful governance over how their data is collected, interpreted, or used, despite surveillance systems being ostensibly designed to improve health outcomes for affected communities. Our research demonstrates that while individual jurisdictions collect different variables, none adequately embed Indigenous data sovereignty into surveillance infrastructure. A national syphilis register presents an opportunity to redesign data governance from inception, incorporating Aboriginal and Torres Strait Islander leadership in system design, community-controlled access protocols, and culturally safe data practices. Without addressing these fundamental governance failures, any national surveillance system risks perpetuating extractive research practices that have historically harmed Aboriginal and Torres Strait Islander Peoples.

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