By Dr Erin Walker and members of the London Young Persons’ Advisory Group
The London Young Persons’ Advisory Group (YPAG) is one of five YPAG groups (see article by Jenny Preston and Sarah Moneypenny). It has been funded by the National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) and University College London, and the Clinical Research Facility (CRF) which is funded by this BRC.
We meet every 6-8 weeks. Membership is open to those aged 8-21 – we have recently increased the upper age limit – and children and young people joining the group must have an interest in improving health research. Some members are patients from GOSH, some are related to GOSH staff, and several have participated in clinical trials. This YPAG meets in the CRF at GOSH. YPAGs are interested in advising on, and providing input to all stages of research, although most frequently they are asked to review participant information sheets for readability, language, acceptability to young people, and overall comprehension.
Now that YPAG has existed for a number of years, several lessons have been learned. Members of YPAG say that:
As the facilitator of the London YPAG, I have noticed that:
General lessons learned are:
Having children and young people from YPAG involved in shaping research has yielded many benefits, to the research, the researchers, and the children and young people involved. Researchers have reported that consulting with YPAG improved the quality of information sheets, by making them more child friendly and improving the comprehensibility overall. Researchers have been impressed by the observations and quality of feedback given by YPAG, and on how insightful children and young people can be about research. YPAG has also helped researchers improve study design by pointing out what would be acceptable to them, as young people, in several research studies.
Members of YPAG have gained skills in presentation (several have presented at high-profile events including the Otto Wolff lecture at the Institute of Child Health in December 2014, and at the Generation R event in September 2013), communication, and team working. They have worked collaboratively with peers of different ages. With some members, this has led to increased confidence and improved self-esteem. Furthermore, children and young people involved in YPAG have gained knowledge they wouldn’t otherwise have gained in school, including what health research is, and about many different health conditions that affect children and young people.
The London YPAG has been a great success story, for researchers and YPAG members alike. In designing and delivering child health research, it is crucial to access and include the voices of those affected by the research, namely children and young people. They are loud, clear, and very insightful.
The website for YPAG is: www.crn.nihr.ac.uk/children/pcpie/young-persons-advisory-group/
Contact: Dr Erin Walker