Stepping Outside Your Box and Patient Engagement

Last year I attended the Manchester Academy for Healthcare Scientist Education (MAHSE) research day, where STP trainees and other speakers gave various talks and presentations. It was a very useful day, learning about other trainee’s research projects and receiving lots of useful advice. One of the keynote speakers, Dr Elaine Cloutman-Green, gave a great talk detailing her journey to becoming a clinical scientist and beyond. One point that particularly stuck with me was “Step out of your box” and the idea of saying “YES” to any opportunities that may come your way, no matter how much out of your ‘box’ they are. As a previous genetic technologist and current trainee bioinformatician, I consider myself firmly in the ‘science’ box. It’s nice and comfy, and feels pretty safe…

So of course, when I received an email from our engagement lead about art contributions to a creative project I just clicked away and dismissed it. Art? That’s not what I do. No. That’s not in my box. I’ll leave it to the professionals. But I remembered Dr Cloutman-Green’s advice. Maybe this could be a bit of a baby-step? So I reopened it and gave it a proper read. The project was focussed on the NHS 70th Birthday and the 100,000 Genome Project, and what it means to you. Hmm. That’s still science-y. I can probably make it using a computer – my ‘science’ box has a computer. Would that still be art? The aim of it is public engagement; I can probably squeeze a competency out of it (!)… Maybe there is some space in my box after all…

So I emailed the engagement lead and checked what they wanted (whilst giving a disclaimer not to expect much) and got to work.

A few days after I sent it off, I got a reply that it said it would be displayed with all of the other pieces that had been submitted in York Hospital. As I was on rotation with the University of York that was pretty convenient, so I popped by one day after work. I had never been to York Hospital, so it was nice to discover it was much smaller and easier to navigate than my Trust. The backbone of the hospital is a single large corridor, with departments and wards branching off. It turns out that this corridor is also a continuous exhibition space as part of their Arts in Hospitals strategy, with pieces all the way along.

Walking down the corridor it struck me how much engagement there was with all of the different exhibitions. So many patients and visitors were looking at the pieces, and even staff clearly in a rush looked at them while walking along.

The genomics space had a real range of art, both in its medium and its subject. Some pieces focused on recognisable forms associated with genomics, such as the double-helix of a strand of DNA. Others were, to an outsider, abstract and completely open to interpretation. Small plaques underneath image gave the artists name, who they were, and what their piece was about. Because genomics is mostly intangible, it allows for a huge range of interpretation and expression of meaning and feeling. Many of the pieces were produced by individuals whose connection to genomics was through the health of themselves or a family member, and as a non-patient facing trainee this provided a real insight into how someone on the receiving side of healthcare feels.

After I had been looking and reading for a few minutes, another person having a look made a comment to me about them, opening up to an insightful conversation about health, genetics and art. My NHS job history has always been non-patient facing, and so my only patient engagement has been when sitting in on clinics as part of my training. This is very valuable, but often only allows a shallow interaction with a patient, limited to discussion around testing, results and timeframes. The discussion I had with this patient allowed a much more direct insight into the perception and feelings associated with genetic conditions and testing. Without the presence of the art in the corridor, we would have simply passed by each other, and I would have never have had the valuable opportunity to engage directly.

When the exhibition had finished I attended a casual meeting with other individuals that had been involved. I heard first-hand some of the experiences of a participant in the 100,000 genome project, and their feelings on the art project to which they also contributed. Hearing about how projects like this have provided an outlet for them really shows how improving and developing patient engagement can improve the healthcare experience for patients and their families. I was also introduced to an exhibition curator from the Wellcome Trust, who shared details of some of their fantastic engagement projects and events that they run in order to engage the public, raise awareness and develop community links.

Through these experiences I realised that I had often dismissed art in hospitals as something to simply make them look a bit nicer, lessening the harsh clinical environment that hospitals sometimes are, instead of as a valuable aid in wellbeing and communication. I think that creative arts are a great way to prompt discussion between patients, families, healthcare professionals and wider communities. It also doesn’t have to be just paintings, drawings and sculptures. Poetry, dance, comedy, games and theatre can all be used for engagement. The more engagement options available, the better! For some people, making the move to research a condition, talk to healthcare professional or read an information leaflet can be daunting. Instead, the offer of seeing a play or hearing some poetry about health allows people to take that first step in an unintimidating, relaxed environment and provides easy starting points for opening up conversation and sharing.

Art can also be used can lower social and emotional barriers, which can be invaluable when discussing genetic conditions which to some individuals or communities may still carry stigmas or taboos. One example is the “Jeans, Whose Genes?” play and workshop commissioned by the Yorkshire and Humber Genomic Medicine Centre. This is a project to communicate messages about genomic medicine and raise awareness of testing, treatment and diagnosis. It was produced with input from local Black and Minority Ethnic communities to address concerns in an accessible, culturally sensitive way and has been performed across Yorkshire. A video of the performance will soon be available on the Genomics England website for those who may like to see it!

I think if I were to produce another image again with the same brief, I doubt I would produce something similar. Now, when I think about genomics in the NHS, it is not the technical and scientific aspects that I think about, but the patients that I have met and their experiences. I did not expect to have so many important learning experiences from this one small opportunity, and it has strengthened my view of the importance of patient engagement outside of direct healthcare. So if you are like me and don’t yet feel comfortable stepping completely out of your box, realise that you don’t always have to make a huge leap. Maybe there are things that you can bring into your box instead.

Thanks for reading!

“Jeans Whose Genes” theatre project link

Information about the exhibitions at York Hospital, inc. the genomics exhibition link

Information about the genomics exhibition: link