HIV Apps – Are They Meeting Users Needs?
Are HIV Apps, smartphone and web meeting the needs of their users?
A team of researchers from University College London and Glasgow Caledonian University recently carried out a review of over 600 HIV apps and online tools. They did this to see if they were meeting their users’ needs.
Due to the stigma still associated with human immunodeficiency virus (HIV), many people turn to online tools and HIV apps to seek information and support with testing and treatment options. Online HIV interventions offer anonymity and can help to break down the barriers to HIV prevention, testing and management. The range of current HIV mobile health initiatives includes prevention messages, results notification, and support to improve antiretroviral therapy (ART) adherence/management.
But how useful, reliable and accurate are they? How difficult is it for users to find the right ones for them?
Key issues for users
What the researchers found, detailed in the first part of their study, published in 2017, was a one-size-fits-all approach. This was widespread, which did not address complex and differing needs. More worryingly, they also discovered some stigmatising and inaccurate attitudes remaining, while important information was missing or hidden:
1. Lack of tailoring and transparency:
The content and risk assessment questions were often not filtered for gender or sexual preference. Many were also deemed “scaremongering” which also eroded trust in the relevance and accuracy of the answers.
2. Public use:
Some HIV-related apps and websites had overt HIV icons and images, or explicit content which would pop up without warning. This could cause embarrassment if accessing the app in a public place.
3. Stigma, language and general ignorance:
Some of the app descriptions revealed ignorance about HIV and contributed to stigmatising. One included in its description, “If you think you have recently been close to someone with HIV/AIDS it is best to quarantine yourself faraway from other people and call a nearby medical center/doctor.” Others claimed to assess people by taking their fingerprints on the screen as a method to test if they have HIV as a prank or joke. Worryingly, “the large number of downloads and positive reviews of these apps suggest that people found the apps credible,” the study noted.
4. Jargon and issues of trust:
The researcher also found it bewildering navigating acronyms, slang and misleading terminology. One instance risk assessment questions totally unrelated to the so-called biomedical tests that were offered for ‘diagnosis’. Wrong terminology, such as “risk of AIDS” rather than “risk of HIV”, was also common. This could be confusing to vulnerable users.
More importantly, the window for HIV testing (the time between someone becoming infected with HIV and being able to detect it in the saliva or blood) was not explained. If so, only in the small print, which could have a serious impact on users’ ability to make informed choices about when and which testing kits to use.
About the study
The starting point for the researchers, led by Aneesha Singh, was that sexual health is an under-explored area of Human-Computer Interaction (HCI).The study of how people interact with computers and to what extent computers are user-friendly.
“We want to understand how online technology can deliver advances in diagnosis and prevention, and support users based on needs at different stages of the pathway,” the study authors said.
However, they cautioned that, “using online information raises important concerns about the trustworthiness of these resources and whether they are fit for purpose.”
They also looked at the functionality of the apps. Following on, they carried out an analysis of user reviews… Click here>> to find out more.
Taking a user-centric approach
They focused on user insights and experiences when searching for HIV apps – what they described as ‘autoethnological’ scoping. Looking at the challenges users had in finding the right apps and information online and in app stores and, crucially, the impressions that the search results and online materials made on them. This was designed to help them identify and evaluate the features offered and see what was missing from a user perspective.
One of the researchers posed as a potential user seeking information on HIV testing and symptoms following an unprotected sexual encounter. They began by searching on Google using phrases such as “could I have HIV?”, and “testing options for HIV”. The web results were mostly well-known healthcare sites, such as NHS Choices, or clinic-based testing sites. However, the search results also gave many targeted promotional links to sites selling HIV self-testing kits.
Searches were confined to the UK Apple iTunes Store and Google Play and used the keywords: HIV, human immunodeficiency virus, acquired immunodeficiency syndrome, and AIDS. The search was conducted in August 2016 and uncovered 683 smartphone apps (296 for iPhones and 387 for Android phones).
Apps were then excluded if they:
Firstly, if they were found not to have HIV content
Secondly, were targeted only at healthcare, medical, industry or research professionals
Thirdly, did not work when downloaded
Fourthly, provided only information on conference schedules and events
Following on, were fundraisers and if not available in English
And lastly, had not been updated in the last three years.
The most relevant apps were “risk calculators and symptom checkers”. None of these apps provided links to self-testing sites or kits, although some GPS-based ones did show the locations of local clinics.
To sum up, the study’s findings revealed that the majority of apps reviewed took a ‘one-size-fits-all’ approach. This meant they did not address the diverse needs of people seeking HIV-related help, from pre-testing to diagnosis, psychosocial support and management.
“There is an urgent need for trustworthy resources to support people accessing information online and to reduce barriers to care. From the person seeking information following a sexual encounter, to someone using a self-testing kit at home with no immediate access to care, to the person living with HIV, apps can provide support. This is a significant opportunity to bring together the strengths of HCI, with relevant clinical expertise, to address issues common to apps for other health conditions and those specific to sexual health/HIV,” the report authors concluded.