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We interviewed Ashkon Seyed-Safi and Amanda Vernon from Professor Julie Daniel’s Cells For Sight lab about organising a successful Patient Engagement Day – Cornea Connect #2 last week.
First of all tell us a little bit about yourselves
I’m Ashkon a medical student at UCL. I’m in my second year of my PhD at the Institute of Ophthalmology (IoO) and I’m looking at limbal epithelial stem cells in the cornea, and how they are regulated.
I’m Amanda, I’m the Quality Assurance and Product Development Manager at the Cells for Sight Research and Transplantation Group. I’m responsible for managing the quality of our clean room and the products we manufacture. I’ve worked at IoO for over 10 years and have covered a range of roles including production of clinical grafts and completion of a PhD. Currently I’m studying to become a qualified person (QP) which is the person responsible for release of medicines to clinical trials or the market.
Here Ashkon is chatting to a patient at Cornea Connect Day 2019
Can you tell us a little bit more about the day itself?
Ashkon - The day began with talks on two genetic conditions, Fuchs endothelial corneal dystrophy (Fuchs), and Aniridia. For each condition, clinicians discussed the current available therapeutic landscape and management options. This was followed by insightful talks from volunteers about their experiences of both diseases and the impact diagnosis and therapies have had on their lives. We also had talks from researchers who presented their most recent work to identify new therapies for treating these conditions.
In the afternoon patients had a chance to spend a bit more time with researchers who demonstrated the techniques and approaches that are being tested in the labs. Groups from each condition sat down with a clinician and Principle Investigator (PI) to talk further about the direction of research in their condition, and discuss which problems they felt should be prioritised within research. Some of the questions raised in the Aniridia focus group included practical considerations, like how to find clinicians with good understanding and experience of Aniridia, a relatively rare disease. On the research front, there was a lot of interest in how we might be able to prevent the changes on the surface of the cornea from happening. Within the Fuchs focus group, topics raised included clarification over the relative benefits of current surgeries.
Had you done anything like this before?
Ashkon - This was my first experience of a patient engagement event. I think that is it important for days like this to happen as clinicians, researchers and patients often interact in clinical and sometimes in academic environments, however, rarely do all three groups have a chance to sit together and share their knowledge and experience.
Amanda - We’d previously organised a Cornea Connect day in 2014 which I was involved in. It was organised by my then colleagues Victoria Tovell and Hannah Levis. It was a great event and I learnt so much more about the conditions we work on that ultimately I was inspired to organise another one.
In this photo Amanda is showing a clean room suit to patients at the event.
How did you find funding for the day?
Amanda – After organising the event in 2014, Victoria Tovell went on to set up the IoO Public and Patient Engagement Committee which held a workshop called ‘Ophthalmology Engage’. This included; what public/patient engagement is, how events can be organised and how to access patient groups. Ophthalmology Engage then offered some funding and I applied and was successful!
I wanted to make sure we added new elements to the original Cornea Connect day so I included another research group working on the cornea (Alice Davidson’s group) – which worked really well! It meant a full exchange of knowledge, not only between patient, researcher and clinician, but also between the two research groups.
This time we also wanted an opportunity for researchers, clinicians and the patients to discuss in smaller groups. In particular we wanted to find out what patients would like to see in future therapies. This worked really well and will hopefully go on to shape the direction of future research.
What were your hopes for the day?
Amanda - My main hopes for the day were: that it was well organised, that we made the day accessible for the people attending and that researchers, clinicians and patients exchanged knowledge!
Luckily we had a lot of help to organise the day from the IoO Public and Patient Engagement Committee. They have a toolkit available which makes life so much easier! I’d strongly recommend organising a similar event here or at your own institution/organisation as you do get a lot out of it!
How did you feel after the event and did you learn anything new?
Amanda - Relieved! Happy! Satisfied! .... And most importantly motivated to make sure we continue to hold Cornea Connect in the future!
As for learnings and new skills, I learnt about adaptation as a skill, for example when we ran the interactive session the patients with Fuchs endothelial corneal dystrophy generally had a greater level of vision than the Aniridia patients so when we ran the first session for the Fuch’s group we could use the pictures/props visually, however, the second group required quick adaptation on our part to explain the same session using words (and other senses) rather than visual cues.
Also a big personal learning for me was don’t presume and always ask for example; assess what level of knowledge someone has before you begin to explain in lay-man’s terms as this could be way too simplified. Patients often know a lot about their disease and the science behind it.
I also learnt about the appropriate use of colour for visually impaired people and how this may change depending on their condition. I had made the signage a bright yellow background with large black font (thinking this was the best combination to be seen), however, feedback from our patient groups was that this actually created a lot of glare. In fact reversing this and using a darker background and bright type would have been better.
Was the day a success?
Ashkon - A feedback board was set up on the day allowing people to tell us if they were happy with the day, would they come again, had fun etc. as well as allowing them to provide any other comments on post-it notes. It was a pleasure to see so many positive comments and happy faces as people left.
Amanda – Yes! We did get some excellent feedback from the patients such as;
‘Well organised event’, and I ‘Learnt more about my Fuchs’s condition’. Everyone that provided feedback said they’d learnt something new! We also had some really useful comments around improvements for future events which we’ll incorporate into the next event.
Ashkon – One attendee sent us a email: "A sincere and heartfelt thank you for the time taken by you and your team yesterday in putting together a fascinating and thoroughly enjoyable set of presentations on your research into Fuchs and Aniridia...I felt very privileged to meet you and your colleagues. For such a wonderful, well organised day – thank you!” It was a wonderful response to have received, and was really encouraging to see that patients had found the day enjoyable and informative!
Would you organise a Patient Engagement event again?
Ashkon - It is a fantastic chance for patients and researchers to engage, and I know that the team at the institute had a great time chatting to, teaching, and learning from patients. It really is a rewarding experience that I cannot recommend enough. The nature of research and clinical practice is that it continues to move forward, and we hope that within these conditions, significant progress will continue to be made, so I absolutely hope that they’ll be a third Cornea Connect to follow in a few years.
Amanda - I hope we will continue to make Cornea Connect bigger and better! I’d strongly recommend organising a Patient Engagement event!
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