Bringing the voice of children and young people into kidney research
The voice of children and young people with lived experience of kidney disease is crucial to make sure research focuses on what is important to patients. Children and young people also provide valuable insights on developing engaging and understandable information for research studies. This is key to giving children and young people the knowledge and confidence to get involved in research.
The Kidney Research UK paediatric and rare diseases PhD Studentship of £8,000 has been awarded to Professor Louise Oni and her PhD student, Libby Thomas. This award will support them to set up a national rare kidney disease young person’s advisory group and evaluate the impact of this group in bringing children and young people’s voices into research.
How can we bring children and young people’s voices to research?
The national rare kidney disease young persons advisory group (R-KID YPAG) will be for children aged 8-18 who have a rare kidney disease. Members will take part in meaningful activities to capture their voice on research projects in rare kidney diseases. This will include providing feedback on research design and patient information. The lived experience of the advisory panel will also help shape patient reported outcomes, which are tools to measure the impact of treatments on what matters most to patients in their daily lives.
Meet Lousie Oni and Libby Thomas
Professor Louise Oni is a senior lecturer in paediatric nephrology at the University of Liverpool and Professor of paediatric nephrology at the UCL Centre for Bladder and Kidney Health. She is also an honorary consultant paediatric nephrologist at Great Ormond Street Hospital for Children. Louise leads the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases which aims to unite the research and patient community to transform treatments for rare kidney diseases on a national scale.
As part of the Centre, Louise will be supervising PhD student, Libby Thomas, to set up and evaluate a national rare kidney disease young person’s advisory group. Libby will be doing her PhD alongside her role as patient and public engagement officer for the UK Kidney Ecosystem.
“Children and young people deserve to have their say. Research involving children and young people often expects a lot of them, for example, taking medications or having certain treatments.
"We need to understand what they feel is important and will benefit their lives the most, and how we can give them information that helps them to understand the research and get involved. Children and young people require their own information, and we need to recognise that to engage them with research.
"We hope these children and young people develop a positive view and relationship with research that they carry with them throughout their lives.” Libby Thomas
Making underrepresented voices heard
The advisory board will involve children from backgrounds that are often underrepresented in research. This is key to making the voice of the advisory board representative of a diverse population of children and young people. As well as actively recruiting from these groups, Louise and her team will remove common barriers to participation, such as access to digital devices, to ensure these children and young people can take part.
Helping children and young people develop lifelong skills
Children and young people on the advisory panel will receive training in research literacy and ethics, and scientific communication, transferable skills which can benefit them in the future, such as in their education and working life. Advisory group members will also be shown where their voice has influenced decisions and change in research.
Measuring the success of the advisory board
Louise and her team will look at the impact of the advisory board in bringing children and young people’s voice into kidney research. They will ask children and young people on the board, and their families, alongside researchers whose projects have received input from the panel, to assess how feedback from the advisory board has influenced research. Louise and her team will also look at the requests for advisory board involvement in research projects to see how much research has received input from the panel to assess its impact.
What could this mean for patients?
This new children and young person’s advisory board could provide a meaningful way of capturing children and young people’s voices in research. Successfully setting up this panel this could lead the way for bringing the voices of children and young patients with other disease conditions into research.
Get our e-newsletter
Stay up to date with our kidney research news, events and ways to get involved.
Why not make a donation now?
Every £ counts towards transforming treatments for people living with kidney disease.