On Thursday 28 July young people from Southwark and Lambeth came together with researchers from across King’s Health Partners to discuss the big questions in healthcare research, in particular the future of healthcare technologies and genetic editing.
The inspirational event took place at, and in collaboration with, Theatre Peckham (https://www.theatrepeckham.co.uk/) and was orchestrated by ‘Utopia Now!’ project lead Hannah Cowan.
The ‘Utopia Now!’ project has been supported by our National Institute for Health and Care Research Guy’s and St Thomas’ Biomedical Research Centre (BRC). For the last two years the project has been bringing young people to the forefront of the discussion around the advancement of clinical research and their feelings of how it will impact the world. Participants worked together with social scientists and creative facilitators to develop creative content such as plays, short stories and films to express their hopes and fears for the future of health. Outputs were compiled into a beautiful zine and some were performed at the event.
Tiny Cingoz kicked off the performances with her poem entitled COVID-19, and discussed the difficulties she faced being unable to see friends and family in lockdown (https://www.utopianow.co.uk/covid-19). Aaliyah Weekes also read her poem, entitled “This Year” which asks people of 2050 to hear what it was like to be living in the year 2020 (https://www.utopianow.co.uk/thisyear).
Two short films were then screened capturing young peoples’ perspectives of what it was like to continue school in the pandemic, and what health and social care priorities need to be focused on in the future. One young person raised questions about the kinds of categories scientific data puts people in.
In the lead up to the event young people who were involved in writing and performing group science fiction plays as part of the ‘Utopia Now!’ project, were tasked with developing monologues as a character in the same world two years later. Highlights included a monologue by Ibrahim playing the role of a cyborg from the play ‘Robots from Mars’ (https://www.utopianow.co.uk/robots) – asking questions about the relationships between humans and machines, and another monologue by Ash reminding us of the feeling of loss when technology fails (See their play ‘Into the Void’: https://www.utopianow.co.uk/void).
Science fiction writer Stephen Oram then introduced three young writers who contributed to “One Day in 2070” (https://www.utopianow.co.uk/fiction)– a series of science fiction short stories. and plays, which were judged by the ‘Utopia Now!’ judging panel. Stephen, who judged the initial writing competition and worked with the young authors to develop their work, said “I had a pleasant surprise when I received the competition entries for judging. They were fantastic. Such insight into possible futures and of human behaviour was heartening. There was some really good story telling too. Not only did they make me smile, chuckle, gasp and raise my eyebrows they made me think about things I’d not previously considered.”
Following the performances, our NIHR BRC supported researchers working in fields spanning the students’ inspiration (technologies, AI and equality in healthcare) shared their research and responses to the thought provoking works, and posed their own questions to the group.
Claire Steves, co-founder of the ZOE app, (https://twinsuk.ac.uk/staff/dr-claire-steves/) asked “Is there a way we could all do science more collectively, together, either through using technologies or through coming into spaces like this together?”.
Tianxiao Wang, Design Engineer and research student at Imperial College London involved in the BEARS project led by Guy’s and St Thomas’ (https://www.guysandstthomasbrc.nihr.ac.uk/microsites/bears/our-team/) asked “What role would you like to play in the future of science?”.
Sasha Henriques – Genetic counsellor and doctoral candidate at Cambridge at Wellcome Connecting science (https://societyandethicsresearch.wellcomeconnectingscience.org/staff/sasha-henriques ) who works as part of Dr Melita Irving’s team at Evelina London Children’s Hospital posed the question; “Science has and can cause harm, but it can also do real good – so what are the things we need to do to make science fairer?”.
Throughout the subsequent discussions between researchers, young people and the audience members, the themes of communication and trust repeatedly came up. Interestingly the group were hesitant about the increasing use of technology in our lives, and have a real desire to return back to being able to communicate in person rather than navigating their whole lives through apps and phones that have increasingly been relied on in the pandemic.
In response to how we can make science fairer for everyone, the main message being fed back was the need to be inclusive and have meaningful conversations with all involved prior to clinical research taking place, to build trust in how research tools are being advanced and used.
Dr Hanna Cowan, who has led the project said: “The ‘Utopia Now!’ project is all about ensuring that the ‘better worlds’ researchers try to create through their work is one that is genuinely seen as ‘better’ by young people – who will have to live in those future worlds. It was brilliant to see researchers at the event genuinely engage with young people’s hopes and concerns for the future that they so vividly presented in their work.”
You can discover all the creative outputs and the zine from the project on the ‘Utopia Now!’ website (https://www.utopianow.co.uk/ ).
‘Utopia Now!’ are continuing the conversation through a series of online blogs from young people and researchers responding to each other’s work. If you would like to be involved or have any other questions on the project please contact Hannah Cowan on email@example.com