Abstract
Human immunodeficiency virus (HIV) case-based surveillance (CBS) systematically and continuously collects available demographic and health event data (sentinel events*) about persons with HIV infection from diagnosis and, if available, throughout routine clinical care until death, to characterize HIV epidemics and guide program improvement (1,2). Surveillance signals such as high viral load, mortality, or recent HIV infection can be used for rapid public health action. To date, few standardized assessments have been conducted to describe HIV CBS systems globally (3,4). For this assessment, a survey was disseminated during May-July 2019 to all U.S. President's Emergency Plan for AIDS Relief (PEPFAR)-supported countries with CDC presence† (46) to describe CBS implementation and identify facilitators and barriers. Among the 39 (85%) countries that responded,§ 20 (51%) have implemented CBS, 15 (38%) were planning implementation, and four (10%)¶ had no plans for implementation. All countries with CBS reported capturing information at the point of diagnosis, and 85% captured sentinel event data. The most common characteristic (75% of implementation countries) that facilitated implementation was using a health information system for CBS. Barriers to CBS implementation included lack of country policies/guidance on mandated reporting of HIV and on CBS, lack of unique identifiers to match and deduplicate patient-level data, and lack of data security standards. Although most surveyed countries reported implementing or planning for implementation of CBS, these barriers need to be addressed to implement effective HIV CBS that can inform the national response to the HIV epidemic.
Highlights
Among the 39 (85%) countries that responded,§ 20 (51%) have implemented case-based surveillance (CBS), 15 (38%) were planning implementation, and four (10%)¶ had no plans for implementation
Barriers to implementation included lack of policies related to CBS, data security, confidentiality, and privacy of Human immunodeficiency virus (HIV) information; criminalization laws; and stigmatization and criminalization of populations at greatest risk for HIV infection.§§ Additional questions assessing implementation barriers were asked of countries that were not planning to implement CBS
Among the 20 implementing countries, all collect the date of diagnosis of HIV infection, and 17 (85%) collect sentinel event data; only 10 of these countries reported using a unique identifier for linking and deduplicating patient-level data (Table 2)
Summary
Barriers to implementation included lack of policies related to CBS, data security, confidentiality, and privacy of HIV information; criminalization laws; and stigmatization and criminalization of populations at greatest risk for HIV infection.§§ Additional questions assessing implementation barriers were asked of countries that were not planning to implement CBS. Several questions applied only to countries that had implemented or were planning to implement CBS These included whether the system captured (or will capture) date of diagnosis of HIV infection and subsequent sentinel events data and security measures for transmitting paper-based data and for transmitting and storing electronic data. Among the 20 implementing countries, all collect the date of diagnosis of HIV infection, and 17 (85%) collect sentinel event data; only 10 of these countries reported using a unique identifier for linking and deduplicating patient-level data (Table 2). Barriers reported by countries not planning to implement CBS included lack of funding and dedicated human resources. HIV was a nationally notifiable condition in 16 of 20 implementing countries, in five of 15 countries planning to implement CBS, and in none of the countries that did not have plans to implement CBS (Table 2)
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