By Liverpool YPAG,
Written by Katherine Shaw, 15 (Nottingham YPAG) and Sarah Moneypenny, 18 (Liverpool YPAG).
Recently launched video of the International Children’s Advisory Network (iCAN) Summit. Read on for further information about our experiences representing GenerationR YPAGs in the UK.
In June we attended the International Children’s Advisory Network’s (iCAN) week long conference in Washington D.C. as part of the UK team representing Young Person’s Advisory Groups across the UK. In the week we took part in many different activities and attended presentations from some top medical researchers and companies in fantastic locations.
In the evening on the first day was the opening ceremony. Here we met all the people from the advisory networks across the world, including Australia, Canada, and Europe and mostly from the US. We learned what projects their groups had been involved in and shared our own experiences of being in a YPAG. The first full day began on the Tuesday. We travelled to the National Children’s Medical Centre where first we introduced ourselves to everyone and then listened to the story of a girl called Evie who, thanks to clinical research, managed to fight and overcome her disease. We then had a tour around the National Children’s Medical Centre and saw state of the art equipment such as the da Vinci surgery machine and a 3D scanner. That evening we attended a baseball game which was very entertaining, especially since the home team won.
On the second day we went to a conference centre in the centre of D.C. The day started with a presentation from the FDA, EMA and Health Canada who had come together to make a board game for us to explain the road to drug discovery. This for me was a highlight of the trip as I thoroughly enjoyed the board game and it helped me to gain a better knowledge of drug discovery. We then had a presentation by a woman from the Nuffield Council of Bioethics. We took part in an activity where we pretended to be an ethics committee and reviewed some proposals. We then learned about US politics, in particular how a bill becomes a law, in preparation for the next day. That evening we went on a moonlit tour of Washington which was a great experience and gave us the chance to see many famous monuments.
On the third and final day the conference was held at the Capitol Hill visitor’s centre. The day started with a talk by a representative from the National Organisation of Rare Disorders. We where surprised by how many rare disorders don’t have a treatment and how little is known about many of them. We were then set the task of going on a scavenger hunt around Capitol Hill and had a meeting with the senator from Connecticut. This was a unique opportunity and it was interesting to hear his views on having Young Person’s Advisory Groups. Our final activity was a tour around the Capitol itself. This and the closing ceremony that evening was a great way to end the week in Washington D.C.
During the week we learnt a lot of new things about clinical research in children and how much the input of young people is beneficial. Our favourite part was the board game made by the EMA, FDA and Health Canada as this was very fun and informative, as well as the moonlit tour around Washington. We thoroughly enjoyed meeting new people and making new friends with people who, like us, are in a Young Person’s Advisory Group, as we could compare what we do in the groups and learn from each other. Being given the opportunity to visit Washington D.C. and to represent the United Kingdom was a fantastic experience and one we will always remember. Watch this space for what next and our links with iCAN.