Drawing on Your Own Experience

On Friday 10th November, I attended a workshop at the Wellcome Collection in London, hosted by staff from The Helix Centre.

The Helix Centre is a design studio, situated just outside where Fleming discovered penicillin. It’s a collaboration between St Mary’s Hospital, Royal College of Art and Imperial College, with the aim of disrupting healthcare systems in order to improve on their structures.

They presented some examples of their work. One issue the healthcare system had was that children with asthma lacked interest in partaking in their lung function exercises. To address this issue, The Helix Centre created a whistle that connected to an app. The child would blow on the whistle, the pitch changed according to power. A microphone connects to the phone, which then links to a game ie. a fire breathing dragon game.

Another example was a leaflet design that navigated the experience of going through cancer care and illustrated the paths of recovery. This was created as a result of cancer care coming last in terms of experience in surveys, which they wanted to address and change.

They also addressed the NHS as the biggest user of pagers, a dated, inefficient form of communication. Doctors can be paged at any time of the day, even when not at work, which then puts the patients safety at risk if being treated by an NHS staff member that hasn’t had sufficient rest. They created a smartphone based platform, which has the ability to request and share clinical tasks that can be organised in terms of severity, urgency and priority and then able to be delegated to different doctors on duty.

The Helix Centre design their projects, ensuring they involve people that will use the product, as it is harder to empathise without having the condition themselves. They do a lot of shadowing as well as in context interviews and group activities. They also create prototypes quickly and regularly, giving them the opportunity to see how their audience interact with it, identify issues and then generate solutions, with the aim of constantly improving their product. In terms of my own practice, it got me thinking that I need to share and get feedback from my work regularly, to ensure what I’m trying to create is getting the desired reaction, or collect reactions in order to fuel a new angle or narrative.

They then introduced us to their current project, the reason I attended this workshop, as I am a victim of this issue. Presented by a regristrar who works in a number of different settings within the hospital, he is involved in transitions of care, where a patient is moved from one setting to another, with one of the most common being from hospital to GP.

The NHS experiences on average 1 million interactions every 36 hours, with an average of 4 minutes per interaction. With so many handovers of patient care, it is not unusual for mistakes to be made, such as medication being forgotten. This can lead to further complications and potential hospitalisation that could’ve been avoided with better communication methods. The Helix Centre plan to address this issue, improving complex information transfer, applying technology to the problem to better understand patient history and complex information between patient and medical staff.

The question they put forward is essentially, in a 10 minute window, how can you communicate complex medical history? Currently, the information is fragmented and spread among different settings. Because of the time limitation, patients feel as though there’s a stopwatch when being seen, which I can identify with when I visit my GP. In that window, I don’t feel I have efficiently communicated my issues yet after several years of being treated, but also I don’t feel as though my previous visits to my GP and other medical appointments have been documented to the best of their ability. Sometimes I’ve felt that the focus is on the wrong issue, they’re is no prioritisation in my symptoms, or perhaps my priorities are not being addressed in my medical history.

Screenshot of Cerner Powerchart from technologyadvice.com

Current methods of documentation are through discussion, making noted during the interactions and the electronic health record Cerner Powerchart. This is a heavily text based platform, but the Helix Centre want to develop a more graphic based interface, where both the patient and medical staff will see the same screen. The question they put forward to us was: How do you graphically represent your medical history?

Our task was to work in groups and create an app prototype, presenting the medical history of a fictional patient. We had to read the patient history, complete a few worksheets, discuss ideas as a group, sketch and make a prototype on card and present to the rest of the groups.

Upon reading the medical history, it became clear that these diagnoses vary in severity, current relevance and are scattered across a long timeline. I read it and instantly wanted to organise it. I imagine that this is an example of what GPs face in an interaction; no wonder there are issues with communication.

We were given some worksheets to fill in, with no right or wrong answers to these questions put forward. These were to be collected at the end for the Helix Centre’s research and towards a clinician’s Ph.D. The first sheet looked at how we interpret colour to severity and types of treatment. This was to be done very quickly, without too much analysis put into it. Naturally, red means danger to me, so the most serious clinical events linked to this colour. We were then given a few questions to answer in order to get a better understanding of how the app would look. Filling these out started to help me visualise how I would go about creating a platform for medical history sharing.

Photo by Matthew Harrison

Working in a group, we started to discuss and mind map our ideas. It was really interesting to work with a group of people with different backgrounds, providing different angles on this issue. There were a few people from a medical background, another artist with an invisible illness and a graphic designer that has done previous work in relation to cancer care. All of these different backgrounds fed different outlooks into the ideas we had collectively.

We knew that we wanted something that would have a clear interface, accessible to a range of different demographic users. Using existing forms of communications that are proven to work, we drew inspiration from social media sites and their profile layouts, using a picture of the patient, a mini general biography including date of birth, address, etc.

We decided that different diagnoses would be colour coded, but didn’t actually assign the colours to the diagnosis, but simply made a colour key in the corner of the interface as a visual suggestion. We thought that the information would be best presented in a timeline, where it could be zoomed in and out to focus on certain timelines, with the option of seeing particular diagnoses in relation to each other to see any common themes. There would be pins on the timeline that represented an event or input of data e.g new medication or treatment.

Photo by Matthew Harrison

When presenting and watching the other groups present, it became apparent that there were a lot of similar ideas going around, with slight variation on interface presentation. There were ideas of having a map of the body, something we put in our mind map, but there were questions around how you would present symptoms that didn’t affect a certain area such as circulatory issues or problems with mental health.

There were a few questions that came up whilst presenting our ideas. Medical treatment that was received for a dormant illness need not be presented in current medical issues if the issue has been healed and is no longer relevant. Who decides that this information is no longer relevant, and what if it becomes relevant in the future? Also, who is inputting the information? We assume it is medical staff treating the patient, but should the patient be able to input data, as views can be contrasting between the two? Where is the divide?

This was a really insightful and interesting workshop. Although quite short for the amount we had to do, it is clear that there is a significant need for an updated and accessible way of documenting medical history and communicating between transfers of care.

In terms of my own practice, the concept using symbols appealed to me and seems to be a way that could effectively communicate my experiences of symptoms. However, I would like to keep my work illustrative and more expressive, instead of being a definitive code to crack. My experiences are personal, but identifiable by other sufferers of the same or similar conditions. Am I communicating to the sufferers, non-sufferers, medical staff or a combination of the three?

What it has addressed is that difficulty in communication isn’t just a personal issue, but a global one and hopefully my work will be relatable in a number of different ways.

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