Patient and public involvement and engagement for researchers

We strongly encourage the involvement of patients, their families and carers, as well as the public in research. We believe involving patient and the public makes our research more relevant, and can lead to treatments that better meet the needs of children and their families.

This page is aimed at researchers 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. If you are a patient or member of the public, please visit our page describing the advisory groups you can join.

Through the work of the National Institute for Health Research (NIHR) GOSH Biomedical Research Centre, we provide support and advice to researchers including:

• One-to-one advice on involving patients and the public in your research and assistance with including and demonstrating this in grant applications.
• Involvement and engagement training events for researchers to build up skills in involving the general public in the research process. In collaboration with the NIHR University College London Hospitals BRC we have organised a series of free, practical training workshops which are open to GOS UCL ICH staff.
• Researchers can apply to attend our two existing research advisory groups in person or ask for written feedback on research (e.g. patient information sheets, lay summaries, research design and protocol etc). The groups are managed and facilitated by the patient and public involvement Lead at GOSH/ICH. Please note preparation time is needed for this and to feedback to the group on changes they will make as a result of consulting the research advisory groups.

The group consists of young people, aged between 12-21 years old, who are interested in medicine, research and science. Some have health conditions and have experience of participating in clinical trials. The group meets 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 YPAG to get input and advice on any element of their project.

The group provides advice and guidance to researchers on how to improve the quality of their research. This could include:

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

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

We are committed to raising awareness and keeping patients and the public informed about research at GOSH. We achieve this through our engagement programme that encourages conversations between patients, the public, staff and our researchers. Prior to 2020, we ran a diverse programme of events and activities including an annual GOSH BRC Family Fun Day in the Autumn as well as activities to mark Rare Disease Day (February) and International Clinical Trials Day (May). Our current plans are to move some of these activities online, with the opportunity for an even wider audience – Do get in touch if you would like to showcase your research with us.

Need help developing your Patient Information Sheets?

Read our GenerationR co-produced with children and young people ‘Patient Information Sheet Guidelines for researchers’ and ‘Patient Information Sheet Checklist for researchers’

Ethics guidance on patient and public involvement in research has been published in a joint statement between the Health Research Authority and INVOLVE

Information about Patient and public involvement training

Guidance on how to provide feedback to public contributors to research.

Information on funding for Patient and public involvement and engagement from NIHR RDS

UCL's Public Engagement Unit

Contact our Patient and Public Involvement and Engagement Manager for research at GOS-ICH: research.ppi@gosh.nhs.uk