By Vijay Tailor-Hamblin,
On Saturday 25th September 2021, in our YPAG meeting, we spent some time trying to help Mr Larkin and his team share the results of their KERALINK trial in a way people would understand. The KERALINK trial tested the ‘cross-linking’ treatment for Kerataconus, to try and stop the deterioration of sight in young people with the condition.
Annegret explained what the condition KERATOCONUS is to us (where the cornea becomes weaker and thinner at the centre which can cause blurry / distorted vision). Then we explored a couple of the KERALINK study results graphs, to see if we could understand their meaning.
We made some suggestions about the titles of the axis and made some suggestions for more simple language. We also suggested removing one of the graphs as it was complicated to understand and didn’t really add anything to patient’s understanding. Mr Larkin gave feedback to say:
“My presentation to the Keratoconus Group, in particular the graphs of results, was significantly simplified. I do think the communication was much more comprehensible.
In my summary letter to the families, I actually deleted the graphs and kept the language simple”.
In our session, we also worked on our e-poster for the UKCRF Symposium Jacq was attending in November. Our poster (which was actually 4 power point slides) shared how we adapted our eyeYPAG meetings during the COVID pandemic, what we learnt and how we all felt about the new online format. The theme of the symposium was ‘Rapid response, reflections and learnings’ @NIHR_UKCRN #CRFsymposium21
Meet Sammy, Youth and Family Participation Officer for Alder Hey Clinical Research Facility.
This short film was madefor adults by the Medical Research Council. It explores three examples of how input from patients and the public can enhance research.
This is a group activity that tests young people#’s knowledge about health research, as well as their steadiness of hand!
