Missing HIV data on high-risk groups threatens public health response

Despite carrying the highest burden of HIV risk, key populations such as sex workers, transgender individuals, people who inject drugs, and incarcerated persons remain critically underrepresented in national health information systems.

A new study, published in Sexes and titled “Tracking HIV Outcomes Among Key Populations in the Routine Health Information Management System: A Systematic Review,” warns that routine monitoring systems in low- and middle-income countries are failing to consistently track HIV-related outcomes for these groups, threatening the global goal of ending the AIDS epidemic

Are routine health information systems effectively capturing key HIV data?

The study evaluates the performance of routine health information systems (RHIS) in tracking HIV outcomes, such as testing, treatment initiation, retention, and viral suppression, among key populations. These groups include sex workers, men who have sex with men, transgender individuals, people who inject drugs, and incarcerated populations.

Drawing from 19 studies across sub-Saharan Africa and select global contexts, the review finds that RHIS remain largely inadequate in disaggregating HIV data by key population categories. In most national systems, key population indicators are either poorly integrated or entirely absent. Where efforts have been made to include them, data coverage tends to be partial, unsystematic, and fragmented across programmatic silos.

The absence of robust tracking mechanisms for these groups means national HIV programs lack the intelligence needed to assess intervention effectiveness. Without specific and routine metrics, such as retention on antiretroviral therapy (ART) or viral load suppression, health authorities cannot monitor progress or detect treatment gaps within these high-risk communities.

Even where key population-focused programming exists, much of the available data are generated through standalone studies or non-routine monitoring projects. These are often donor-driven and operate outside of official national data systems, creating a parallel infrastructure that limits continuity, comparability, and long-term utility.

What are the structural barriers undermining inclusion in HIV data systems?

The review identifies several recurring structural and systemic barriers that hinder the integration of key population data into RHIS. Among the most pressing is the criminalization and marginalization of key populations, which discourage both self-disclosure by individuals and data collection by service providers. In countries where same-sex behavior, sex work, or drug use are illegal, individuals are unlikely to identify their risk group status during routine health visits.

This legal context is compounded by persistent stigma and discrimination within healthcare settings. The study points to widespread reluctance among health workers to record sensitive data, either due to discomfort, lack of training, or fear of breaching confidentiality. In some cases, health system protocols actively exclude key population identifiers to avoid drawing political or public attention.

Another challenge lies in the poor interoperability between program-specific data collection tools and national RHIS platforms. Many donor-funded HIV programs targeting key populations operate on independent information systems, which do not sync with national platforms. As a result, even when data are collected, they are not integrated into the routine monitoring frameworks that guide national policy.

Technological and design issues further complicate the problem. The absence of standardized key population fields in electronic medical records and national health databases means even willing providers cannot enter or extract the necessary data. In manual systems, the lack of disaggregated templates or indicators renders tracking infeasible at scale.

The cumulative effect is a system-level invisibility of key populations within national HIV responses, despite these groups accounting for more than half of all new HIV infections globally.

What does the study recommend for strengthening HIV monitoring?

The authors offer a multi-pronged set of recommendations to bridge the current gaps in HIV data tracking for key populations. Central among these is the call to formally integrate key population-specific indicators into national RHIS. This means developing inclusive HIV monitoring tools that capture metrics such as testing uptake, ART initiation, adherence, and viral suppression, disaggregated by population group.

The study advocates for legal and policy reforms to decriminalize behaviors associated with HIV risk, as a foundational step toward enabling safe and accurate data collection. Removing punitive laws would reduce fear among service users and allow for more honest engagement with health systems.

Training and sensitization of healthcare workers is also emphasized as a crucial strategy. Providers need to understand the importance of key population data, know how to ask appropriate questions without causing harm, and feel equipped to record and act on the information ethically.

To address the fragmentation caused by parallel data systems, the authors recommend developing integrated data platforms that can absorb information from donor-funded initiatives into national health databases. Interoperability standards, digital health reforms, and national stewardship over data architecture are essential for this consolidation.

In countries where anonymity and data sensitivity are top concerns, the study suggests adopting innovative approaches such as unique identifier codes (UICs) that allow tracking of individual health outcomes without compromising privacy. These tools can support continuity of care and longitudinal monitoring without requiring disclosure of legal or stigmatized identities.

Additionally, the review urges increased political will and global funding to support the expansion of inclusive RHIS. Donors, governments, and health ministries must prioritize key population tracking not as a luxury but as a public health necessity. Transparent reporting and accountability mechanisms should be embedded into national HIV strategies to ensure that progress among all population groups is visible and actionable.