Involving patients and the public in our research

Involving patients and members of the public is essential to the research we carry out at Great Ormond Street Hospital (GOSH) and the UCL Great Ormond Street Institute of Child Health (UCL GOS ICH). As such, patient and public involvement is embedded in the NIHR GOSH BRC.

This page is aimed at general members of the public and those who want to involve or engage with research. If you are a researcher at Great Ormond Street Hospital (GOSH) or the UCL Great Ormond Street Institute of Child Health (ICH) and any staff member interested in carrying out research who wants to learn more about involving and engaging patients and the public with their research, please visit our dedicated pages for you.

High quality research depends on listening to the voices of children and young people, as well as their families and carers, taking account of their experiences, priorities and perspectives. This process of joint working is vital to how we design and carry out our research.

We involve and engage patients and the public in our research through:

• Involvement: We aim to actively consult, involve and listen to patients and members of the public about their views on our research. We do this via our GOSH Young Persons' Advisory Group for research (YPAG) and our GOSH Parent and Carer Research Advisory Group (PCAG). 
• Engagement: We aim to raise awareness of research carried out by NIHR GOSH BRC and GOSH researchers amongst patients and members of the public.

If you are a patient, sibling of a patient, member of the public, family member or carer of a child or young person being treated at GOSH, you might want to join one of our advisory groups – email us at at research.ppi@gosh.nhs.uk and take a look at what we do below.

New members always welcome as we help shape child health research at GOSH and beyond!

• We are a group of children and young people aged between 12-21 years old.
• Some of our members have health conditions and have experience of participating in clinical trials.
• We meet 6 times a year to advise researchers on their work.
• Researchers who are planning to undertake health research with children and young people can plan to visit GOSH YPAG to get input and advice on any element of their project.

GOSH YPAG is part of a national network of groups called Generation R, and our group is one of 19 YPAG's around the country! We often collaborate with other YPAG's too.

New members always needed to help continue to improve research into child health.

• Was your child born premature, have they had a health condition as new-born an/or infant or do they currently have a health condition?
• Has your child taken part in a clinical trial at GOSH?
• Could you provide a parent perspective on research carried out into child health?

As part of the group you will provide advice and guidance to researchers on how to improve the quality of their research. This could include:

• Giving feedback on research proposals and funding applications, study design and dissemination;
• Helping with revision of participant information literature and consent forms for studies and developing accessible information sheets.

You can attend up to four meetings a year via Zoom.

In between meetings, researchers also consult with the group via email.

No specialist knowledge in health or research is needed as we will provide support to help with getting involved.

You can read a Role Description and Terms of Reference (ToR) for the group.