MyHIV was live from 2011 to 2019, after which it evolved into My Community Forum on a new technology platform. Members asked for 'HIV' to be dropped from its name to emphasise the 'community' ethos of the next incarnation of the forum.
How could we preserve the information in MyHIV while respecting the anonymity of its members?
This has been my mission since I started coordinating My Community Forum two years ago. The solution came from HEU, the Health Economics Unit, and an advisory group of forum members who discussed together the options available to us. We formed a partnership to explore the information within the forum and its archiving possibilities. Together we started to look at the different conversations and the treasure trove of experience contained inside. We discovered the power of peer support to help us navigate what it means to be living with HIV.
The forum was pioneering at the time of its launch, beginning as Life Plus with lots of tools for self-management. You could set reminders for medication and appointments and talk with others about your treatment. Over its lifetime conversations then moved to more emotional support and building a community of care and encouragement.
In 2013 a team of volunteers joined to be the foundation of the service. They answered queries and were ever-present to pass on their wisdom, decipher medical jargon or simply comment on the weather and connect. At its peak in 2013, there were an incredible 11,720 messages from all over the world. Clearly, with this wealth of information, a detailed analysis of these impactful conversations was needed.
This has now been completed and we have a measure of the importance of peer support and the key words that were shared in those conversations. Santosh from HEU has created a video where he presents the findings of the anonymised data, with beautiful word clouds and graphs produced using Natural Language Processing (NLP) which illustrates the issues and themes that matter most to our members. Here’s an example from 2018:
So what do we do now? We have plans to follow this up with some abstracts to present at conferences, but also create an eBook of these findings with further details of our members lived experience and personal stories.
What impact did the forum have for you? How did it support you on your journey with HIV?
These are some of the questions I will be asking for the eBook in interviews. I will transcribe the answers to get more of the humour and heartfelt stories that I know are there. If you want to participate please do get in contact – we can keep anonymity or not, it's your preference. You'll be able to see the final copy before it is published. You can share as little or as much as you want. Even if you just want to tell us why you chose your avatar for your profile or tell us about one particular time in the SHOUT BOX where you asked a question. It will be these anecdotes and bits of information that will give a true full reflection of all that the forum was, is and can continue to be.
Please do watch Santosh’s video and also look at the old My HIV forum while it is still accessible. My HIV forum will not be held on its current platform after Saturday 30 September 2023 so if you want to see any old posts this is your opportunity.
Do remember that My Community Forum will continue to be available for you.
We recognise that some members may not wish to look back; some have moved on to be amazing advocates for peer support and others are living their best lives beyond HIV. However, let’s remember that the forum is a unique part of our community’s history, and the invitation to be included in its archiving is here, so please get in touch with me on [email protected] .
Mel Rattue is our Online Peer Support Coordinator, Living Well.