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My journey to UK LLC’s Public Involvement Programme

Michael Gregg

1st Jul 2025

My name is Michael (he/him). In this blog I am going to talk about what I have done as a public contributor for UK Longitudinal Linkage Collaboration (UK LLC). I’ll set out some of what led me to UK LLC (https://ukllc.ac.uk/). I’ll also detail how I have helped with work behind the scenes. This includes the bits I have enjoyed most or learnt from. To finish, I’ll look to the future and what I hope for the programme.

I am a disabled man who has a variety of long-term health conditions. I have some rarer conditions such as gastroparesis that developed over time. It was this illness journey that led to me getting involved with PPIE. I started with one-off focus groups. In time I got involved with a larger project or two. Then I saw the UK LLC Public Involvement Programme (https://ukllc.ac.uk/public-involvement) advertised.  

I had an interest in health data due to my own journey. Namely, I was interested in who wasn’t represented by the data. So, I applied. 

Along the way I learnt that a study I was in, was joining UK LLC. That spurred me on even more. So, I was quite excited when I joined the Public Advisory Group.  

How I have contributed to the work of UK LLC 

Looking back, we have done so much since we started. I learnt a lot from one of the big early projects we worked on. We commented on animations being produced that helped explain what UK LLC is (UK LLC overview animation: https://youtu.be/QfyaG3zemcs and How we link data animation: https://youtu.be/FXnHc8R3UW0). It threw up questions for me like: Does it make sense? Do the animations work? Does the story flow well? Is it consistent? Does it represent the range of experiences in society? 

I also helped with a variety of other tasks. I have given feedback on PPIE sections on funding applications. I have also fed back on the website. The most exciting task for me was getting to attend a round of interviews for a new UK LLC member of staff whose role was to involve working closely with members of the public.  

More recently I have joined the Strategic Advisory Committee at UK LLC. This allows me to have a more rounded view of what’s going on. We get to hear from the directors and comment on the direction of certain projects. This includes getting to discuss ethics and other issues from a public point of view.    

I try to approach tasks with an access lens or with an Equity, Diversity and Inclusion focus. This has led to me raising suggestions about how data is discussed and who is represented when images are used. 

My hopes for the future 

I am excited to see how other projects like the Citizen Panel change as well as contribute to the work going forward (https://ukllc.ac.uk/blog/2025/02/21/uk-llc-citizen-panel-hybrid-workshop-the-iceberg-and-the-view-under-the-waters.html). I hope that as UK LLC changes and grows it brings a greater range of lived experiences to the Public Involvement Programme. 

If you are interested in the UK LLC Public Involvement Programme, email comms@ukllc.ac.uk