How young people are shaping healthcare
Tabitha Owen and Lizzy Choong explain how young people are changing the way healthcare services are run and influencing research to make it more patient centred
Tabitha Owen, member of Great Ormond Street Hospital Young People’s Forum, London, UK
At 3 years old, I was diagnosed with neuroblastoma and have spent more than a decade being treated at Great Ormond Street Hospital (GOSH) in London.
I am a member of the Young People’s Forum (YPF) (www.gosh.nhs.uk/teenagers/teengosh-community/young-peoples-forum), which is a group of people between the ages of 11 and 25 who are current or former patients, or siblings of patients, who have been treated at GOSH. All of us are immensely motivated to improve the experience of young people who spend time at GOSH, because being on wards with younger children can be lonely and isolating.
We meet six times a year at GOSH and participate in a range of activities—from giving feedback on building redevelopment plans, to working with the head of information technology to improve the Wi-Fi and entertainment system, as well as advising on what food should go into lunchboxes in the canteen.
I love being part of the YPF because changing these small things can make a huge difference to patients’ experience at GOSH at such a difficult time in their lives.
In November 2017, we hosted the first National Youth Forum meet up, where members of hospital or health related youth forums came to London to share their experiences of being patients in the NHS. We discussed young people’s rights, practical issues associated with healthcare, and the emotional challenge of being a young patient. Going forward, one of the YPF’s primary goals is to improve the mental health of young patients who have lengthy stays in hospital. Teenage patients, in particular, can have a challenging time because of the lack of facilities and activities tailored to them, and because they feel that they don’t belong in the same place as much younger children. The transition to adult services is also challenging because it means forming new relationships with healthcare professionals, as well as worrying about whether the care you receive in an adult service will be as good. I left the conference feeling inspired by everyone I had met and by the motivation of all the YPFs from hospitals around the country to get young people’s voices heard, so that they can shape the experience around their own care.
Lizzy Choong, member of Great Ormond Street Hospital’s Young Persons Advisory Group – part of the Generation R network (supported by the National Institute for Health Research), London, UK
I am part of Generation R ( www.generationr.org.uk), which consists of six young people’s advisory groups (YPAGs) around England that meet regularly to learn about clinical research and discuss how to make it work better for young people. We all believe that more research needs to be in collaboration with children—not simply on children—so that they understand the research being carried out on them; we also advise on how the process can be more patient centred.
When I was younger, I had severe allergies and was a regular patient at GOSH. I wanted to contribute to Generation R because I am grateful for the care I received, and I wanted to give something back. The young people who are part of the YPAGs are between 8 and 21 years old and usually have an interest in medicine, research, and science. Some of us have been treated for health problems and have participated in clinical trials.
At YPAG meetings, which are held every six weeks, we give researchers feedback on how to design clinical trials to make them more suited to young people. At our last meeting, a researcher from a drugs company presented a clinical trial that was being planned, and he asked for our feedback on the wording used in the assent forms [consent forms used for children]. We split up into groups and went through the form, changing words or phrases into more accessible language for our age groups. At the end of the form there was a smiley face, which made us think that we were being forced to be happy with taking part in the clinical trial. The researcher thought it would be reassuring, but we found it creepy and thought it would make us think twice about taking part. After our feedback, the creepy smiley face was removed.
YPAGs help researchers speak the right language when encouraging children to take part in clinical trials and be comfortable with the process. Little details in research trials might be a big deal for young people and affect their experience as participants. We hope that our work encourages more children to take part in research, and also helps researchers answer questions that make a difference to children and their families. Through our work as the Generation R collective, we are having a direct influence on how research is being designed and conducted, and ensuring that the patient voice is represented. It’s only logical for us to shape the world we live in.Tabitha Owen, member of Great Ormond Street Hospital Young People’s Forum, Lizzy Choong, member of Great Ormond Street Hospital Young Person’s Advisory Group
Great Ormond Street Hospital, London, UK
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.