Patient and Public Involvement
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 (ICH). As such, Patient and Public Involvement is embedded in the GOSH NIHR BRC.
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 Young Person’s advisory Group (YPAG) and our Parent/Carer Research Advisory Group.
- Engagement: We aim to raise awareness of research carried out by BRC and GOSH researchers amongst patients and members of the public.
If you are a member of the public, patient, family member or carer of someone being treated at GOSH, you might want to join one of our advisory groups – email us at at email@example.com and take a look at what we do below.
Young Person’s Advisory Group (YPAG)
If you are aged between 8–21 and are interested in improving health by advising on research, then you might like to join the GOSH YPAG. We meet at GOSH monthly and provide feedback to researchers to help them carry out research which is relevant to children and young people. YPAG is part of a national network of groups called Generation R, and our London group is one of five around the country.
YPAG members get involved in all aspects of research, from myth busting to helping us create informative videos about research. Alexis and Frankie even provided the expert voice over for our newest research video on a cutting edge treatment called Gene Therapy.
Parent/Carer Research Advisory Group
We’re looking for parents or carers who have a child with a health condition to help us improve research into child health.
We have recently set up a group with parents and carers to improve the quality of research. No specialist knowledge in health or research is needed as we will provide training and support to help with getting involved.
In a ‘normal’ year, we organise and deliver a range of activities for patients, their families and members of the public where you can meet researchers and find out about their work. 2020 was anything but normal and many of our activities are now remote – this has allowed us to cater to many more people and we will be exploring how we deliver our meetings and events in the future. Please check our BRC events page for details of upcoming events.
See our news report from 2019, which highlights how young people assisted in research - Young people shaping healthcare technology research.