HIVSmart! App Uses Mobile Technology to Link Self-Testing to Care and Counseling

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Home-based HIV testing is a relatively new development in HIV diagnosis, and it is still somewhat controversial. Many providers and advocates have questioned whether people who test while home and alone would be able to deal with a positive diagnosis -- and whether they would follow up to be linked to care. Some have wondered whether people would take the test and vanish. However, at the Controlling the Epidemic Conference in Geneva, Switzerland, in May 2018, Nitika Pant Pai, M.D., M.P.H., Ph.D., associate professor of medicine at McGill University, presented her implementation research on HIVSmart!, a home-based test with an app to connect people to care, showing that home testing need not mean that people find out their status and disappear due to shame and self-stigma.

Kenyon Farrow is the senior editor of TheBody.com and TheBodyPRO.com. Follow Kenyon on Twitter: @kenyonfarrow.


Nitika Pant Pai, M.D., M.P.H., Ph.D., by Julie Robert, McGill University Health Centre

What Is HIV Self-Testing?

According to the World Health Organization (WHO) guidelines, HIV self-testing "means that the person [being tested] does the HIV diagnostic test and interprets the results in private." WHO began working on HIV self-testing in 2013 and published its guidelines in 2016. HIV home tests have been approved and are in use in a few countries, including the U.S.; a handful of countries have guidelines but have not implemented policies; and according to WHO, 44 countries have policies in development.

Two kinds of self-testing strategies exist: An individual may self-administer the test unsupervised (at home, for instance) and counselors or health care workers can aid and guide its administration.


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Who Does Self-Testing Work For? And Is It Effective?

One reason for implementing self-testing is persisting HIV stigma, which may keep people from seeking HIV tests in health care settings. Globally, it is estimated that 40% of people who are living with HIV are unaware of their status (in the U.S., about 15% of all people with HIV are undiagnosed). Many people think that self-testing could be a way to reach people who are currently inaccessible to traditional testing methods and may be undiagnosed.

"There are more than 250 studies globally and 12 [randomized control trials]" providing evidence that "HIV self-testing uptake expands access to self-testing [and] knowledge of serostatus and increases the frequency of testing, and a recent paper showed self-testing increased partner notification," said Pai. However, she also noted a lack of data so far showing whether self-testing correlates to whether a person is linked to care.

With mounting research showing that self-testing can increase the number of people who know their status but little data showing how to best link people who test positive to care, Pai developed HIVSmart!. In Geneva, she presented her results on its use among Canadian men who have sex with men (MSM) and among a generalized population in South Africa.


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What Is HIVSmart!?

HIVSmart! is a mobile, tablet, or internet-based application that helps self-testers use the test and interpret the results, and it links them to local providers and counseling services regardless of their HIV status. According to Pai, the application stores the results and is compliant with HIPAA (the Health Insurance Portability and Accountability Act of 1996).

HIVSmart! is currently available for use with saliva and blood (finger prick) self-tests. It was developed in Canada and thus far has been tested and evaluated in Canada and South Africa. After developing the first two prototypes to improve the application from 2006 to 2013, as the first phase of her study, Pai tested the third and final prototype among Canadian MSM from 2015 to 2017.


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What Were the Results in Canada?

Although self-tests are not yet approved in Canada, Pai tested HIVSmart! among 450 MSM in Montreal. The study was conducted in a clinic, but study participants were allowed to use the app and self-test unsupervised in order to mirror a home environment. After receiving the results, participants were linked to appropriate care and/or counseling services the same day.

Pai presented the results of this leg of the study at IDWeek 2017, and she found that participants were highly capable of administering the self-test and interpreting the results (91% accuracy in interpreting serostatus); moreover, participants found it acceptable, were all linked to care, and 94% of them received other referrals.

"Highly encouraged by the findings of this data, we got funded by Grant Challenges Canada to take this project to scale in a township in South Africa," she said.


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South Africa Results

In the South African study, Pai researched whether HIVSmart! combined with an oral self-test would "allow choice, increase referrals, detect new infections, and increase linkages to care." Instead of focusing on a specific population, this phase enrolled young people who had never been tested despite their risk-category.

In this observational study, participants were offered a choice of unsupervised self-testing at home or in another private space of their choosing, or a supervised self-test taken at the clinic. Preliminary observations demonstrate that many of the participants are being linked to care. Participants are enjoying this pro-participant strategy, though full data have yet to be analyzed.


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What Does This Mean for the Future of HIV Testing?

Pai doesn't see self-testing as a replacement for testing in medical settings or the work done by community based organizations. According to Pai, self-testing is a middle road: a way to reach people who are either inaccessible to our other systems or don't get tested due to fear of stigma and discrimination. Convenience, confidentiality, and affordability may make self-testing attractive to some people who would not otherwise get tested.

Pai also mentioned that implementers of self-testing options should be careful to educate providers and community health care workers. In her research, she found that many people in the HIV workforce were leery of self-testing, partly due to fear that their own jobs might be in jeopardy. She thought it was important to frame the self-test as a bridge to care for people who don't normally access care and who, after first experiencing self-testing, may ultimately become more comfortable with more traditional forms of testing.

She also addressed criticisms of self-testing, including whether people in coerced relationships (intimate partner violence, sex workers with pimps, etc.) would be forced to test and, if found positive, further targeted for violence, or whether people who fear a positive diagnosis would commit some form of self-harm or even suicide without the testing help of a provider or community health worker. She made it very clear that little evidence exists of these things occurring due to self-testing.

However, Pai did discuss one major factor that remains a potential barrier: the cost of the home test. "We need affordable self-tests," said Pai. "And we need affordable self-tests not just for the African continent, but we need them for middle- and high-income countries too. We cannot sell them for $40 or $80 when they cost just maybe $10."