ACTIVE is a group of children and young people just like you!
Some of them are or have been patients at the hospital, some of them are thinking about working in a medical career, and some are just interested in medical science and research and want to make a difference.
The group meets up at Addenbrooke’s Hospital eight times a year, either on Wednesday evenings or Saturday afternoons.
How ACTIVE has helped the CRF:
Unfortunately, Cambridge Science Festivals was cancelled in March 2020, ACTIVE group were joining us to run the mock chocolate research trial. In December 2020, Covid-19 restrictions were still in place at the hospital, this did not stop our public involvement and hearing the young people’s views. Instead of a face to face meeting, we had a virtual one instead. The project for ACTIVE group was to discuss Dr Schoenmakers Chronic Hypothyroidism research study and review patient information sheets. The adult documents were kindly peer reviewed by CUH PPI Panel
Dr Schoenmakers, presented information to the group of 10 young people, about her Chronic Hypothyroidism research study (including the slide to the left), a video introducing the research team and a tour of our CCRC L4 where the trial would take place and a closer look a what happens when you have a BODPOD (a safe way to measure body space) and a DXA scan.
“Thanks for your support – aren’t they a fantastic group of young people? I enjoyed this much more than most of my adult interactions today!” Dr Schoenmakers feedback of her experience to Caroline- NIHR Cambridge CRF PPI Lead.
In July 2019 ACTIVE looked over our patient information sheets and consent forms for Dr Laura Watson’s Eating Disorder study, which is looking at the metabolism (how well the body uses the food you eat as energy so the rest of your body can function) of healthy children and adolescents.
ACTIVE members looked over the study’s patient information sheets and consent forms, and also provided a young person’s perspective on the kind of things that would matter to them when taking part in studies.
Caroline McMahon, PPI Lead at the CRF, said: “Their feedback was great – and they thought about things which didn’t even occur to us but which could help reassure healthy young people thinking about taking part in one of our studies.”