In September I was invited to the Cochrane Conference in Edinburgh, Scotland by the lovely Dr Erin Walker ( Patient Insight and involvement Lead for UCLpartner's ). The conference was themed, " Better evidence for better health decisions", and was a patient included event along with researchers from around the world. I was invited to talk and co present the findings of a study I had previously worked on, it was about,"involving children and young people in the creation and dissemination of products for complex evidence synthesis of inventions to improve the mental health of children and young people with longterm conditions".
Erin and a team of researcher from Exeter university led by Dr Jo Thompson-Coon, set up a research advisory group to be apart of the study, it was made up of 8 children and young people (including me), with neurological and rheumatological conditions. We had 4 meetings discussing different topics about our mental health experiences. During the last 2 meetings parents were invited to share their thoughts on the different topics. At the very last meeting we recorded a podcast to summerise what had been discussed.
I flew to Edinburgh with Erin and my mum, to present the research and enjoy 3 days at the conference, and listen to various presentations, and taking part in workshops. It was also a great opportunity to talk about Lupus and kattysterritory.com my website. it was also great sightseeing in beautiful windy Scotland. The conference really helped me understand the world and thought process of researchers and the need for patient involvement (especially young patients).
The main focus of our trip was to prepare and present our findings of the study of the study through a 15 minute presentation, Erin and I spent time in London and in Edinburgh perfecting our presentation with pictures and clips from the podcast we did at the end or the study. The conclusion was that there needed to be more UK based research
Our presentation went very well and I was confident that we got our information across and I hope that I was able to represent young people in the best way. Erin and I also recorded a podcast at the conference disscussing involving young people in research.
I had an incredible time I thoroughly enjoyed the conference and exploring Scotland, I want to thank Erin and Jo especially for the amazing opportunity I am very grateful.