ACTIVE at Addenbrooke’s

Want to make a difference for kids at Addenbrooke’s? Got any bright ideas? Aged 8-18 years? Why not join ACTIVE?

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.

If you would like to become a member or if you have any questions, please email active@addenbrookes.nhs.uk – you can also visit their webpage on the Addenbrooke’s website.

How ACTIVE has helped the CRF:

December 2020, Covid-19 restrictions were still in place at the hospital, this did not stop our public involvement and hearing young people’s views. Instead of a face to face meetings, we had a virtual ones instead. The project for ACTIVE group was to discuss Dr Schoenmakers, Chronic Hypothyroidism research study, reviewing patient information sheets and consent forms. The adult documents were kindly peer reviewed by CUH PPI Panel 

Dr Schoenmakers, started the meeting showing a video introducing the research team including a tour of Cambridge Clinical Research Centre Level 4 (Translational Research Facility) and NIHR Cambridge CRF Metabolic Research Area, this is where the trial would take place, including a closer look a what happens when you have a BODPOD (a safe way to measure body space) and a DXA scan. Then, Dr Schoenmakers gave a short but informative presentation to the group of 10 young people (the slide to the left is one) about her research study and why she wanted to find out answers to her question.

After the presentation there was time for a Q&A session where the group asked some great questions. After a week, feedback was in and the suggestions had been well received.

“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.

Unfortunately, Cambridge Science Festivals was cancelled in March 2020 due to the Covid-19 pandemic. Members of ACTIVE were joining us at the NIHR Cambridge CRF and carrying out a mock chocolate research trial.

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.”