We've embarked on a project to preserve, archive and learn from the data contained within our old myHIV forum, which was online from 2011 to 2019.

This is in partnership with the NHS Health Economics Unit (HEU), part of the NHS Midlands and Lancashire Commissioning Support Unit (MLCSU).

The myHIV forum allowed people living with HIV to talk and support one another about everything from diagnosis and medication to experiences of relationships and stigma.

The objective of this project is to create an archive product that will serve as a record of the forum for anyone interested in the history of HIV and the impact of digital health communities on patient-centred care.

The old forum is a valuable piece of history and we hope that the lessons learned from this archive around the benefits of peer support and how this impacts the lived experience of HIV, can help shape future healthcare practices and better service the needs of those living with HIV and others with long-term health conditions.

We'll be communicating our findings once we complete the project.

Our current forum can be found at My Community Forum.

Why are we creating this archive?


The forum, which opened in 2011 and closed in 2019, has been the subject of requests from its membership to preserve its data as an archive or historical record.

This forum documented a unique era in the history of HIV. Online services were in their early stages and people living with HIV faced significant levels of enacted and internalised stigma. This period also marked a significant transformation in HIV treatment and prevention with the development of PEP, PrEP, and improved treatment options that drove forward further prevention in transmission.

The discussions and content on the forum demonstrate the huge impact of peer support on the health outcomes of its members. The forum also provided a platform for individuals to self-manage their HIV and tools to advocate for their healthcare needs, highlighting the growing role of digital peer support in healthcare delivery.

Digital communities have become an increasingly popular means of accessing and sharing health information. The analysis and report could provide a valuable resource for people living with HIV, healthcare professionals, policymakers, and patients to better understand the role of digital communities in supporting patient-centred care. It may also identify opportunities for innovation and improvement in digital health platforms, ultimately leading to better healthcare outcomes for patients.

It's crucial to capture and preserve this history, both for its historical significance and to allow us to draw valuable lessons for the development of patient-led responses to healthcare and improve healthcare in the future.

Who are HEU and why are we working with them?


The Health Economics Unit is a team of experts from the NHS who use their knowledge and experience to analyse health and care data and information. The analysis is used to help healthcare leaders make better decisions and improve the quality and efficiency of healthcare services for communities.

In the summer of 2022, we engaged in discussions with the Health Economics Unit to explore the feasibility of archiving the myHIV forum. In November 2022, the HEU secured internal NHS funding to bring this project to fruition.

How are we ensuring the anonymity and confidentiality of member’s data?


Along with HEU, we've undertaken a rigorous data protection and information governance process within both organisations to ensure that member’s data remains anonymous and confidential.

A Data Protection Impact Assessment (DPIA) has been carried out that meets the requirements of both HEU and our data protection requirements and those of the General Data Protection Regulations (GDPR).

All data extraction and analysis is done in a way that preserves forum members' anonymity.

The first step is for all information to be anonymised on our servers, removing identifiable traits. This includes details like names, locations, age groups, co-morbidities and other health issues.

Step two is for the anonymised data to be securely moved to an access-restricted NHS server. The themes will be extracted using a machine learning algorithm, and no analyst will directly read the already anonymised data.

The goal of the analysis includes extracting the most common themes of the forum. Approaches to identify common themes will include:

  • Topic modelling to statistically infer the themes discussed in the text.
  • Clustering to understand how the journey varied among different people.

What are the outcomes?


Reviewing the forum discussions about HIV, the approaches to peer support, self-management and treatment will provide valuable insights into:

  • How the experiences of people living with HIV have changed over time, as treatment protocols evolved and public perception of HIV/AIDS shifted.
  • The impact of HIV on the lives of people living with HIV in areas ranging from romance and sexuality to housing, work, and mental health.
  • Changes in HIV care and treatment and in health workers’ attitudes towards people living with HIV.

We'll communicate these insights in a variety of ways. These may include a report by HEU and Terrence Higgins Trust, blog posts or other website articles, a social media campaign and a brief summary/infographic explaining key learnings.

Why are we doing it now and when is the work taking place?


We expect to finish archiving the myHIV forum by the end of May.

At some point later in 2023, we're going to permanently close the server where the data from the myHIV forum is currently stored, with the data no longer being accessible to members.

We've yet to decide on the exact date of closure, but we'll make every effort to publicise it in good time to let previous forum members extract any of their own posts before it closes.

How is the forum community involved?


The project is being shaped by a steering group comprised of current forum members and volunteers, as well as members who were active in the myHIV forum.

We and HEU have had several meetings with the steering group to date and these will be ongoing during the project. These meetings are aimed at establishing the scope of the project, validating emerging themes, identifying desirable outcomes from this project, and addressing any questions and concerns that arise along the way.

Who can I contact if I have any questions or concerns about the project?


If you have questions or concerns about this project, or would like to get involved, please share these with any of the My Community Forum volunteers or with Jim Fielder, our Head of Living Well. You can email Jim at [email protected].

The HEU can be contacted at: [email protected]

I never consented to have my data used in this way so why are you using it?


We recognise that people have shared personal information on the myHIV forum, some of which may have been extremely sensitive, in the knowledge that their information would not be shared, their privacy would not be breached and the information would remain confidential.

As explained above, HEU will anonymise and extract the data in a way that does not involve anyone looking at it. This means the researchers will only see the emerging themes (for example, loneliness or discrimination at the hands of healthcare professionals), and not any of the individual stories on which they are based.

In other words, we can capture the essence of the forum without compromising the anonymity of individual contributors.

Will you ever use data contained within the current forum in a similar way?


We currently have no intention of using the data contained within My Community Forum for the purposes described above. The data analysis work that is being conducted on the myHIV forum is being done at the request of forum members.

My Community Forum users can be assured that we'll never compromise confidentiality, even if research on the forum were to take place in the future.