On Thursday 25 April 2024, the DATAMIND and MQ Data Science Meeting took place in Swansea. The DATAMIND Hub maximises data’s value by safely and securely uniting data from many sources, including health records, schools and administrative data, charity data, research trials, genomics, longitudinal studies and cohort data. DATAMIND ensures data can be found through the UK Health Data Research Innovation Gateway, meaning researchers can use the data to help address complicated questions about mental health. This in turn holds the potential to improve diagnosis, treatment and, ultimately, psychological wellbeing.
MQ Ambassador James Downs (pictured above, 3rd from the left) spoke on the day as part of a panel at the DATAMIND and MQ meeting in Swansea. Here he shares some of the thoughts he offered on the day, giving us an insight into how important data science is when it comes to mental health.
Living With Mental Illness: Why Is Data Science Relevant?
One of the wonderful things about my role as an Ambassador for MQ is the opportunity to get involved in the projects and networks of research that they support. Having lived with an eating disorder and other mental and physical health problems for most of my life, being able to meet people who are putting their brainpower and energy to use to help people like me is hugely encouraging and meaningful.
Left behind for so long, mental health is now viewed as a priority for research, and the growth of mental health science as a field goes to show this.
There is, though, an element of difficulty for me – and possible for others like me – when mixing with researchers, scientists and people creating new knowledge about conditions I have lived with for so long. Yes, it’s exciting, and people are rightly enthusiastic about their work, but it is also hard to work out how new discoveries and breakthroughs in our understandings of mental illnesses will help people like me.
How does a new dataset or technology translate into the urgent help many people might need now, or might have needed twenty years ago? How can we include people with lived experience in new innovations and the process of research, when the new knowledge created may not translate into help on the ground any time soon? How can we not overlook the sadness that might come with unmet needs in the past, however bright the future we create might look?
In April I took part in a panel event at the DATAMIND and MQ Data Science Meeting in Swansea. Not only was this a great opportunity to run along the beach trying to find the venue, but it was also an eye-opening event in learning more about the imaginative ways researchers are trying to mobilise data and technology to bring about more coordinated and impactful research outcomes.
I took part in a panel event about the social impact of data science, something that I didn’t really think I would have much to say about. As someone with lived and living experience of mental illness, my expertise is more in the nuanced “phenomenology” of subjective experiences than it is in big datasets and statistical analyses.
When trying to work out what I might be able to say, I realised that maybe being stumped about the concept of data science and how it is relevant to me was the point that I could make. When struggling with illness, unable to access the care that you need, and often met with a lack of understanding from professionals, data science is the last thing you might look to for real-life, on-the-ground help.
So even if the prospects for better treatment and health outcomes that come from using data in intelligent ways are positive, I think it is always important to remember those who may still be left behind and to validate the struggle people have in the here and now.
One way of respecting the needs of these people with lived experience is to include them in research – from design and data collection to the analysis of results and their communication. At least this way our experiences of unmet needs can help set the agenda for how to meet the needs of others, including ourselves, in the future.
It was brilliant on the day to see that those gathered in Swansea placed such importance on including people with lived experience – not just as a “nice to have”, but as central to research. There is still some way to go to embedding good practices of co-production within research projects, but MQ leads the way in doing this well and always champions the role of lived experience in research. I hope we can continue to help more and more research teams to work meaningfully with the people with lived experience, to help close the gap between the suffering we see and the evidence-based solutions we need.
Our thanks to James for sharing his words with us, making it so clear that research is the way towards a mentally healthier future for us all.
To find out more, watch this video about DATAMIND:
