MELD-B Research Project: Meet Jack

Introducing Jack

Jack lives in Weymouth and works in an NHS library. It’s a very different and distinct service from a public library, it’s part of a national network of Knowledge and Library Services. Finding things out is clearly a passion for Jack as he is intending to qualify as a librarian by doing post-graduate course in information science or something similar. He’s previously done youth work and was involved in campaigning to improve mental health services.

During his time as a youth worker, he did some peer research, talking to people about their lived experience of COVID-19. Jack got involved with Autistica (UK’s leading autism research and campaigning charity) working with them on a mental health workshop and an ageing summit. From Twitter, he found his way into an advisory group for NHS England on learning disability and autism. He was involved in a collaborative research project with University College London, as part of a campaign led by Ambitious about Autism, into understanding the mental health experiences of young autistic adults aged 16-25 called ‘Know Your Normal’. He is citied as a co-author into this award-winning project. A current Bristol University project Jack is involved with is a study looking into the effect of Sertraline (generally used as an anti-anxiety medication) on autistic adults. He is excited about this project as it is the first of its kind that is working directly with autistic adults in a randomised controlled trial. Jack has particular interest in autism, learning disabilities, equality, diversity and inclusion.

Jack described a large project he’s working on and joked that it has a very complicated title: Meld-B (Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity). Its purpose is to better understand the experiences of people at different life stages. Especially, more later in life and of what burdensome means in terms of having multi conditions, illnesses or disabilities that impact the quality of our lives. It's trying to identify what are the causes within society generally, using different data sets from studies in the past. It’s too much data to go through using humans alone so it utilises artificial intelligence to identify patterns and trends. It is Jack’s hope that the outcome of the study can hopefully address some of that multimorbidity and those challenges that come with it.

Jack's role within MELD-B

The role Jack fulfils is as a member of the advisory board. He sees that job as overseeing the study as a whole and to give feedback and scrutiny. He feels that it's his lived experience that forms his input into the direction and the decisions made for the study. He’s been involved from the early days, June 2022, and intends to stay with it until it’s natural end in 2025. Jack believes that conducting a study about people requires working with people in order to capture and reflect those life experiences. It is important that people in the general population help and assist with shaping the direction and the eventual outcomes of research.

An interesting element of Jack’s involvement in the communication and dissemination of the study information was the making of an animated film, designed to make the study accessible to the general public. The advisory board saw the first draft and had lots of comments which the production team took on board. Jack was clear that it would have been beneficial to have the advisory board involved in the planning of the film, but he was aware of time and financial constraints and that the complexity of the study is hard to convey in a short film. He has provided the narration for the final, polished version. Jack considered this exercise to be a success: contributors’ opinions were listened to, and changes were made resulting in an accessible film.

Jack's reflections

Jack talked about his various experiences as a public contributor and how there's a bit of a mismatch between PPI (Patient & Public Involvement) input and the professionals. Some of the researchers he’s come into contact with haven’t had lots of experience with PPI. So, he’s been sign posting them to blogs and different links that hopefully help to better inform their knowledge and understanding of PPI and how to involve people from different backgrounds.

In terms of personal achievements and goals for Jack, he’s really enjoyed the journey and variety. He hopes to see further studies that are carried forward from Meld-B that would be the impetus or the gateway for other studies to then look into specific conditions or complex conditions. He said that it is not necessarily about finding a cure, that is a very bold statement to make, but to make life more manageable and find preventative measures to stop certain conditions being a burden on people and the NHS.

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