Abstract
BackgroundIndividual-level data are needed to optimize clinical care and monitor and evaluate HIV services. Confidentiality and security of such data must be safeguarded to avoid stigmatization and discrimination of people living with HIV. We set out to assess the extent that countries scaling up HIV services have developed and implemented guidelines to protect the confidentiality and security of HIV information.MethodsQuestionnaires were sent to UNAIDS field staff in 98 middle- and lower-income countries, some reportedly with guidelines (G-countries) and others intending to develop them (NG-countries). Responses were scored, aggregated and weighted to produce standard scores for six categories: information governance, country policies, data collection, data storage, data transfer and data access. Responses were analyzed using regression analyses for associations with national HIV prevalence, gross national income per capita, OECD income, receiving US PEPFAR funding, and being a G- or NG-country. Differences between G- and NG-countries were investigated using non-parametric methods.ResultsHigher information governance scores were observed for G-countries compared with NG-countries; no differences were observed between country policies or data collection categories. However, for data storage, data transfer and data access, G-countries had lower scores compared with NG-countries. No significant associations were observed between country score and HIV prevalence, per capita gross national income, OECD economic category, and whether countries had received PEPFAR funding.ConclusionsFew countries, including G-countries, had developed comprehensive guidelines on protecting the confidentiality and security of HIV information. Countries must develop their own guidelines, using established frameworks to guide their efforts, and may require assistance in adapting, adopting and implementing them.
Highlights
Individual-level data are needed to optimize clinical care and monitor and evaluate HIV services
In terms of the type of data collected through these monitoring and evaluation (M&E) systems, of the 63 countries that completed this question, all reported that they collected health sector data, 91% collected data on social services, 88% collected geographical information, 86% educational information, 64% economic data and 61% labour data
No significant differences were observed between responses from G- and NG-countries
Summary
Individual-level data are needed to optimize clinical care and monitor and evaluate HIV services. Many middle- and lower-income countries are scaling up HIV prevention, treatment, care and support services within the context of Universal Access [1] and achieving the Millennium Development Goals [2]. This involves collecting individual-level data, which enable individuals to be tracked over time within and between sites for clinical management, and can provide information for monitoring or evaluating services. Confidentiality and security must be ensured for data collection, storage, use and dissemination within countries and at international levels This includes the physical protection of data to guard against environmental threats, such as floods, fire or other environmental threats, and the protection needed to guard against inappropriate use by humans of sensitive information, whether due to inadvertent or deliberate activities. This involves an ongoing process of refining the balance between: a) Maximizing benefits that can and should come from the wise and fullest use of data b) Minimizing the harm that can result from either malicious or inadvertent inappropriate release of individually identifiable data
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