SSHIA Condemns Misuse of Health Data, Calls for Safeguards

JUBA — The South Sudan Health Informatics Association today issued a strong statement condemning the growing misuse of health data in the country, following documented incidents in which identifiable patient information was shared publicly on social media and used in community disputes. The association, as the national professional body for those who handle health information, called on all actors — health facilities, government offices, NGOs, and individual health workers — to uphold basic data protection principles, and announced an immediate expansion of its training on health data ethics.

Health information is among the most sensitive data any society holds about its members. A diagnosis, a test result, or even a simple register entry can expose a person to stigma, discrimination or harm when it leaves the circle of care. The association reminded all custodians of health data that trust is the foundation of the health system itself: patients answer intimate questions honestly, and communities accept surveillance activities, only because they believe the information will be protected and used for their benefit.

The statement set out five principles that the association expects every handler of health information to follow: collect only what is needed for care and legitimate public health purposes; protect registers and devices with the same diligence as medicines; never share identifiable information outside authorised channels; use aggregate, de-identified figures for any public communication; and report suspected breaches immediately through professional channels rather than concealing them. These principles, the association noted, are consistent with international standards and with the professional ethics that all SSHIA-certified practitioners commit to upholding.

In direct response to the incidents, the association announced that its Health Data Ethics module — previously an elective — becomes a mandatory component of every certified training programme, and that a dedicated one-day ethics workshop will be offered free of charge to county health information officers in all ten states over the coming year. The association is also engaging the Ministry of Health on a national health data protection framework, offering its technical expertise in drafting practical safeguards that work in real facilities, not only on paper.

The association invited members of the public who have concerns about how health information is handled to raise them through its contact and inquiry channels, and encouraged health workers to seek guidance from its mentorship network whenever they face difficult data-handling situations. Protecting patients, the statement concluded, is not an administrative burden — it is part of the duty of care.