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.
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 firstname.lastname@example.org and take a look at what we do below.
GOSH Young Person’s Advisory Group (YPAG) for research
If you are aged between 10-21, are interested in medicine, research and science, then get in touch to join GOSH YPAG. Some of our group have health conditions and have experience of participating in clinical trials. We meet six times a year to advise researchers on their work. Researchers who are planning to undertake health research with children and young people can make arrangements to visit GOSH YPAG to get input and advice on any element of their project.
GOSH YPAG members get involved in all aspects of research, from myth busting to helping us create informative videos about research, and providing voiceovers for animations about research projects at GOSH.
Alexis and Freddie even provided the expert voice over for our newest research video on a cutting edge treatment called Gene Therapy.
GOSH Parent and Carer Advisory Group for research (PCAG)
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.
Please check our BRC events page for details of upcoming events.