The Health Economics Unit was proud to have their work with the Terrence Higgins Trust featured at AIDS 2024, the 25th annual AIDS conference, in July. Lead Client Service Manager Garvin Taylor explains how our work helps preserve the vital legacy of a first-of-its-kind online forum.
In today’s “modern world”, we have so much reliable medical information at our fingertips, that when we don’t know the answer, we can simply go onto our digital platforms and immediately find a solution. When we have an ailment, for many our first stop is not NHS 111, but instead we pay a quick visit to Dr Google, who we trust will give us an initial diagnosis before we proceed any further.
For some people, online medical resources and information have been available since almost the inception of the internet, but for people living with HIV in 2011, there was no way of getting reliable and trusted medical advice, or even simply emotional support via their computer.
The Terrence Higgins Trust (THT), the UK’s leading HIV charity, providing testing, counselling, support and advocacy, recognised the need to provide something special, which would address this information vacuum. They created an online platform “myHIV forum” for people living with HIV to enable them to share common experiences and support each other. This was especially powerful because often forum members were experiencing high levels of stigma around their status. It was literally a lifeline for people throughout the UK and overseas.
The forum existed for over 11 years providing information on topics including understanding HIV, diagnosis timeline, and treatment options. Beyond the practical advice, when people talked about how they felt about their recent diagnosis, they received a massive wave of positivity and much needed encouragement back from the community.
Now, more than a decade later, an upgrade is needed to the digital platform. This potentially meant that this “time capsule of peoples experiences” including all the discussions, themes and community support would be lost forever. The Terrence Higgins Trust knew that this historical document needed not only to be preserved, but also studied – the narrative could teach us how we could better support people when it came to providing online information and support.
The Health Economics Unit was asked to help analyse, understand and preserve the discussions and their themes, while maintaining the anonymity of forum posters. We used natural language processing to analyse thousands of anonymised posts from the myHIV forum, creating a Top 10 of the most discussed topics over each year, which were extracted via a machine learning algorithm. This treasure trove of real-life experiences was accepted and presented at the AIDS2024 international conference in Munich in July.
The finding underlines the immense benefit of open online forums for managing conditions like HIV and the importance of listening to past voices to improve future patient care.
Read more about this work and its outcomes.