How we make research relevant to children and young people

8 Mar 2022, 2 p.m.

Here at Great Ormond Street Hospital (GOSH), we invite children and young people aged between 10–21 to join our Young Person’s Advisory Group (YPAG).

For those interested in healthcare, this offers an opportunity to advise on research and gain an insight into a research career.

Importantly, it helps shape our research to be accessible and relevant to children and young people.

Our group is part of a national network of YPAG’s called Generation R, and our London group is one of 18 around the country.

Being able to see the growth of potentially life-changing science has helped inspire me to pursue a career in research or clinical academic medicine.

17 year-old Parveen joined YPAG 7 months ago

Celebrating women and girls in science

We spoke to four members of GOSH YPAG about what being involved in research at GOSH means to them.

Parveen, 17

A portrait photo of YPAG member Parveen

Parveen joined YPAG 7 months ago and loves hearing about new developments happening within research.

I’ve always been curious about scientific research and the endless possibilities it provides.

I found YPAG to be an extremely unique opportunity and having the ability to contribute in some way was new and exciting. It also helped me to see the real-life application of things I’m learning in school. What I love about science is that the most unimaginable, mind-blowing and life-changing ideas can be brought to reality through vigorous research!

I have thoroughly enjoyed being part of YPAG and hearing about new, upcoming developments happening within research.

It’s incredibly important for young people to have an input since they make up such a large part of the population, however, their perspective often gets overlooked.

YPAG allows researchers to communicate with young people about the various aspects of research and development; from leaflets creating to video making and game designing.

Lydia, 16

I got involved in YPAG because I am really interested in medical research; how it works and relates to different conditions and diseases. I am also interested in making sure that everything is accessible so that everyone can understand what is going on with their healthcare.

I hope that coming to YPAG as part of their research helps scientists to make sure that the way they present their research is easy to comprehend by children and young people.

I have enjoyed learning about all of the different medical conditions and what the doctors and scientists are doing to cure them or allow people to live better lives alongside their disease. I know have a better understanding about all of the work that is put into each scientific research project as I didn’t know how many different things that scientists and doctors had to do before publishing their research.

Being part of YPAG has also inspired me and one day I would like to be a doctor and maybe even work at GOSH!

Alex, 19

I joined YPAG aged 16. At the time I had just started studying predominantly science-based A-levels and I was keen to expand my knowledge of the work carried out at GOSH and have some insight into the “behind the scenes” of the researchers work.

Joining YPAG was one of the best decisions I have ever made! I think one of the things I have enjoyed the most is the people I have met along the way. Firstly, all the YPAG members are super friendly which has enabled me to make so many friends; something great about this is that we are all different ages, live in different places, and have different interests, so it is nice that we all get on so well.

Meeting the scientists and doctors has been another enjoyable thing about YPAG. I love receiving the email that tells me what we are going to be talking about in our next session, and it is even better when you get to meet the researchers and doctors and hear them talk so passionately about their work.

This part of YPAG has also been helpful to me as I have learnt a lot from the researchers, and I feel like I have a unique insight into research that most ordinary people never get to see.

A portrait selfie of YPAG member, Alex

19 year-old Alex joined YPAG at age 16 and is now studying medicine at University.

I think being a member of YPAG has shown me that there is a lot more to medicine and healthcare than doctors and nurses giving people treatment to make them feel better.

Certainly, as a medical student now, when I discuss medicines or treatments with my tutors I have a much greater appreciation for all the work that happen before that treatment could be made available, than I would have had I not been part of YPAG.

Being a member of YPAG has also taught me that science does not always have to be about chemicals and medicines – sometimes more holistic approaches to research can benefit patients just as much. Designing our dream hospital as part of the YPAG Sensing Spaces workshop showed me how important it is that patients feel safe and comfortable in the hospital environment. This has changed my perspective of science as it has shown me that in healthcare the patient experience is just as important as the treatment they receive, and this is something I will take into my own practice in the future.

Science is exciting! I think something I really love about it is that it never stops evolving. Every day a scientist somewhere discovers a new type of protein or a new cellular mechanism which, although not revolutionary in itself, when we put the work of lots of scientists together, we can discover something quite magical which might help us make people feel better or might get us a step closer to landing on Mars.

I also find science fascinating as it is the reason why we get ill but also the way we can make ourselves better- yet there is still so much we do not know or understand about it.

As a medical student we are taught a lot about finding the patient perspective in the work we do. How is this condition affecting the individual? What treatment does that person want? I think this is why sharing information and taking to YPAG is so important as we are the voice for patients and young people.

Talking to YPAG allows us to put ourselves in the shoes of young people and tell researchers how we would feel in that situation – this means they can get feedback on how they can change their work to make it better for the young people receiving it.

I think this is essential as it helps improve patients’ experience of care and treatment at GOSH so that going to hospital becomes less of a scary or uncomfortable process for them.

Hannah, 18

I first got involved with YPAG in 2021, while being a member of the Young People’s Forum and a patient at GOSH.

Although I have not been a member for very long, I have had lots of amazing opportunities to get involved with research, including meeting research teams through the virtual meetings, joining steering and focus groups, and reviewing patient information sheets. In the future I would love to be working within medical or scientific research.

I really enjoy being part of YPAG, especially learning about how a research study runs, from how important patient and public involvement and engagement is in gaining funding to the different types of studies and the science behind them.

One of my favourite things about science is how everything is connected, and YPAG has highlighted to me the importance of teamwork between different areas, including patients and computer scientists.

I think it is important for GOSH scientists to talk to YPAG to ensure their research is explained in an accessible and engaging way for children and young people, and to make sure taking part in research is as stress free for patients as possible.

Join our GOSH Young People's Advisory Group

Are you aged 10-21 and interested in science? To join our GOSH Young People's Advisory Group, email research.ppi@gosh.nhs.uk.

Together with other young people, you'll help to improve child health through research.

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