Progress Towards Unique Patient Identification and Case-Based Surveillance within the Southern African Development Community (SADC)

Abstract Background: Despite significant advances within the South African Development Community (SADC) in making HIV care more accessible through universal prevention, testing, and treatment policies, the mobile nature of the population presents a challenge to tracking and linking of patients to HIV care, and other health services. Case-based surveillance (CBS) through individual-level clinical data linked and tracked with a unique patient identifier (UPI) has been recommended to create a more person-centred health information system, and is an important policy consideration within PEPFAR-supported countries. Methods: We conducted a landscape analysis of UPI and CBS implementation within selected SADC countries through a mixed-methods study design that included the following activities: 1) a literature review to gather evidence around UPI implementation and patient-tracking in the SADC region; 2) an assessment of progress towards UPI and CBS implementation within relatively high HIV prevalence SADC countries; and 3) a case-study of UPI implementation within selected South African primary healthcare (PHC) facilities. Results : Research into UPI implementation and movement towards CBS for the SADC region is lacking. Existing patient identification methods, such as name and surname, may not uniquely identify a patient or guarantee confidentiality. If a UPI has been assigned these are often facility specific, i.e. a patient can be tracked within a facility, but not across facilities. Other challenges include multiple identifiers allocated to one patient, incorrectly captured UPIs, preference for paper-based records and a lack of integration between numerous stand-alone health-information systems, e.g. laboratory databases and electronic health records, resulting in fragmented health information which limits patient-tracking and monitoring. Our analysis revealed that most countries were in the early-middle stages of the shift towards CBS and had challenges with UPI implementation. Our South African case-study found that the required identifier, which is critical for record-linkage and systems-integration, may often not be recorded. Conclusions: Until a fully functional and reliable UPI is in place difficulties tracking patients across prevention and care cascades will continue. Progress towards CBS was lagging in all countries, consistently hampered by a preference for paper-based records and difficulties implementing the UPI, underscoring a need for increased policy efforts and support to address this gap.