research design, justice, stigma, HIV, online service delivery, pilot study using rapid HIV test kit, key population, HIV
HIV self-testing (HIVST) is an important activity to complement existing facility-based HIV testing services. HIVST allows individuals to perform a rapid HIV test by collecting an oral or blood specimen and to interpret the results at home or in any private location,1 addressing confidentiality concerns and counteracting major barriers of stigma and discrimination.2 The World Health Organization released HIVST guidelines and multicountry evidence on feasibility, acceptability, and accuracy of various HIVST service delivery models. Many low- and middle-income countries (LMICs) are now planning, introducing, and scaling-up HIVST,3 but formal policies on the use of self-test kits have not yet been developed in most LMICs. The HIV epidemic continues to disproportionately affect individuals from key population groups (men who have sex with men, people who inject drugs, transgender individuals, and female sex workers). To increase uptake and frequency of HIV testing among these groups, many countries are implementing various HIVST strategies.
A group of researchers in a multiethnic Southeast Asian country collaborated with a local HIV/AIDS nongovernmental organization (NGO) to conduct a pilot study of online HIVST information and service delivery portal. The study findings were expected to guide the development of strategies, regulations, and standard operating procedures for HIVST scale-up across the country. In the pilot study, interested individuals from key population groups could register and place their order for free HIVST kits on an online platform specifically created for this purpose. The website also provided comprehensive HIV-related resources and information relevant to the local population, such as directories of community-friendly clinics, HIV/AIDS community organizations, and community health workers. In addition to the test kit, users received condoms, lubricant, and informational pamphlets about HIV and how to use the test kits, including what to do in the event of a positive result. The 1-year pilot project led to a substantial increase in HIV testing and linkage to care, showing high feasibility and acceptability of the online HIVST service delivery model. Following completion of the pilot project, the NGO collaborated with that country’s Ministry of Health to plan a scaled implementation of the same HIVST online service delivery model, although users would now pay out-of-pocket for test kits.
Although the pilot project was declared a success, HIVST research data revealed unsatisfactorily low HIVST uptake by localities in two states in that country during the pilot phase. The country has a well-developed urban infrastructure, but there were several villages/rural areas with poor infrastructure and inadequate internet coverage, such as in State Y, where more than 70% of the population live in rural areas and many live below the poverty line. Some villages are not accessible by paved roads and do not have internet access. Education and HIV awareness levels also vary widely across different population groups in the country. Currently, there are two HIV/AIDS community organizations in State Y, both located in urban areas.
Questions
State Y represents a different set of challenges when it comes to implementing the online HIVST service delivery system. Should the researchers implement the original pilot model in State Y? Do you see any ethical concerns in replicating the original model?
Following the success of the pilot study, the subsequent phase of the study requires users to pay out-of-pocket for their test kits. If this study will also be rolled out in areas with poor infrastructure, such as State Y, is the implementation of out-of-pocket expenses justifiable?
Under the pilot study, any care given to the research participants was assumed by the Ministry of Health, researchers, or the NGO. The care provided was not always related to the research question or provided to mitigate harm from participation in the research. Examples include supplying medicines to prevent HIV infection. Which, if any, of these parties ought to continue to assume such ancillary care responsibilities during scaled implementation?
