Protecting HIV information in countries scaling up HIV services: a baseline study

Area of Science:

• Public Health
• Infectious Disease Epidemiology
• Health Informatics

Background:

• Individual-level data are essential for optimizing HIV clinical care and monitoring services.
• Protecting the confidentiality and security of HIV information is critical to prevent stigmatization and discrimination.
• Assessing the development and implementation of HIV information protection guidelines in countries scaling up services is necessary.

Purpose of the Study:

• To evaluate the extent to which countries have developed and implemented guidelines for protecting the confidentiality and security of HIV information.
• To compare guideline development between countries with existing guidelines (G-countries) and those intending to develop them (NG-countries).

Main Methods:

• A questionnaire survey was administered to UNAIDS field staff in 98 middle- and lower-income countries.
• Responses were scored and aggregated across six categories: information governance, country policies, data collection, data storage, data transfer, and data access.
• Regression analyses examined associations with national HIV prevalence, economic factors, and funding, while non-parametric methods compared G- and NG-countries.

Main Results:

• G-countries demonstrated higher information governance scores than NG-countries.
• No significant differences were found in country policies or data collection scores between G- and NG-countries.
• G-countries had lower scores in data storage, data transfer, and data access compared to NG-countries, with no significant associations found with national HIV prevalence, economic status, or PEPFAR funding.

Conclusions:

• Comprehensive guidelines for protecting HIV information confidentiality and security are lacking in most countries, including those with existing frameworks.
• Countries need to develop tailored guidelines, potentially utilizing established frameworks for adaptation and implementation.
• Assistance may be required for countries to effectively adapt, adopt, and implement these crucial guidelines.