When you think of TikTok, what comes to mind? Dance challenges, trending memes, quick laughs? Increasingly, it has also become a space where young people look for information about their health. For millions of people who may never pick up a medical textbook or sit through a lecture, platforms like TikTok are where they first hear about issues like mental health, contraception, or HIV. But what happens when life-saving information on these platforms is incomplete, misleading, or simply wrong? That was the question behind our recent study on HIV self-testing content on TikTok.

HIV self-testing, often called HIVST, is a relatively new approach recommended by the World Health Organization since 2016. It allows people to collect their own sample, either blood from a finger prick or oral fluid, carry out the test privately, and read the result on their own. This shift is crucial because too many people worldwide still do not know their HIV status, which prevents them from accessing treatment and increases the risk of unknowingly transmitting the virus to others. Self-testing is meant to break down barriers of stigma, distance, and confidentiality, making it easier for people to know their status. Yet, for self-testing to fulfill this promise, people must have clear, accurate, and trustworthy guidance on how to use the kits and what steps to take afterward.

Our research, published in Discover Public Health, set out to examine exactly what people encounter when they search TikTok for HIV self-testing education. Between late December 2022 and early January 2023, we screened over one hundred videos using search terms such as “HIV self-testing,” “HIV,” “HIV awareness,” and similar hashtags. After excluding non-English and irrelevant content, we analyzed 78 videos that claimed to offer some form of HIV self-testing education. To judge their quality, we used a standard tool called the Medical Quality Video Evaluation Tool, or MQ-VET, which looks at dimensions like clarity, accuracy, comprehensiveness, and production quality.

We also examined the creators of these videos being uploaded on TikTok. The majority came from influencers and general TikTok users, accounting for nearly half of all the content. Health professionals, NGOs, and ministries of health were far less visible, posting only a handful of videos between them. Interestingly, the type of uploader did not seem to predict whether a video was high-quality or not; some influencers did a reasonable job, while some professionals did not meet the mark. Still, the imbalance shows that the people and institutions most qualified to provide accurate health information are underrepresented on the platform.

 Out of the 78 TikTok videos analyzed, four out of every five videos concentrated on instructions to use the kits, but only one in five went further to address issues like why testing matters, how to cope with stigma, or what steps to take after a positive result. That means a large portion of the TikTok audience is being shown how to use a kit but not necessarily being equipped with the context or next steps that are just as important.

Even more concerning was the overall quality of the videos. On the MQ-VET scale, the average score was just 42 out of 100. In other words, most videos fall in the weak- to low-quality range. A video that looks slick, entertaining, and trustworthy can still miss critical information. Inaccurate or incomplete guidance in this case is not just a small mistake; it could leave someone without proper follow-up, unsure of their result, or unaware of where to seek help.

The reach of these videos also varied dramatically. Altogether, the 78 videos we studied had been viewed more than 166,000 times, with some individual posts reaching tens of thousands of viewers. That level of reach is powerful; if accurate content goes viral, it could play a significant role in bridging the HIV diagnosis gap. But if low-quality content is amplified instead, it risks spreading confusion or giving people a false sense of security.

So what does this mean for the future of HIV self-testing education online? First, it highlights the urgent need for healthcare professionals, researchers, NGOs, and ministries to step into these spaces more boldly. If influencers are already shaping the conversation, why not collaborate with them to produce videos that are both engaging and medically sound? TikTok thrives on creativity storytelling, humor, trends, and short, relatable content, yet those formats can be adapted to carry accurate, impactful messages about health.

Second, it is not enough to simply upload accurate videos. They must be designed to compete within TikTok’s algorithm, which rewards engagement rather than accuracy. That means producing content that is visually appealing, easy to understand, emotionally resonant, and aligned with the way TikTok users consume media. Otherwise, even the best content may remain invisible.

Finally, this study raises bigger questions about how social media platforms handle health information. Should platforms like TikTok work with health authorities to certify or highlight reliable sources? Could there be badges or labels to help viewers distinguish between casual commentary and medically verified content? These are policy questions that go beyond individual creators but are essential if we want to make social media a safer place for health education.