D-CYPHR – let children be champions for their own health
“Every child has the right to the best possible health”
Article 24, UN Rights of the Child
Over 1.7 million children and young people in England alone live with a chronic health condition, and despite most diseases starting in childhood, to date most health research has taken place with adults.
The right to the best health means that health systems need the best childrens’ health research. Research looks for answers for current problems and makes sure healthcare for children and young people gets better over time.
But how can children and young people themselves take a stand for their own health rights? And how can they exercise their right to be represented in research that affects them?
It is possible – and important – to include the voices of young people in shaping health research.
How?
In the UK, a world first project has opened for all 12 million under 16s in the country to join-in with health research: D-CYPHR – The DNA, Children + Young People’s Health Resource. With parental consent, any child or young person aged 0-15 can join online from home, or via participating clinics, by providing a saliva sample and health and lifestyle information. This data can support a wide range of health research studies. Participants may also be invited to other studies, and can choose to accept or not.
D-CYPHR has also launched a Young Ambassadors programme to highlight the voices of young health champions across the UK, empowering them to take a stand for their own health. These young people have helped shape the programme, giving feedback on the research study materials for families, from official forms to marketing items such as posters.
Launched by NIHR BioResource and the NHS and young people’s mental health charity ‘Anna Freud’ in the summer of 2023, D-CYPHR now more than 5,000 volunteers signed up and has begun inviting its pioneer families and young people to take part in health research studies. Researchers apply to access D-CYPHR and if approved, can work with data and invite volunteers to studies. We are now at the exciting stage where young volunteers have an opportunity to help select the studies that are approved.
“We have reached a point in D-CYPHR where researchers are applying, and we are actively working with our young people and family groups, to get them to shape how they get their say. We are asking them how we should present studies to young people, how far do they feel they need to be involved, and what is the best format for getting young feedback. We are also working with different patient and public groups, cities and hospitals across the country for their opinions. It has been wonderful to hear from all the young people involved; they give us unique and astute insights we wouldn’t have thought of. This is vital for our process – we need to hear from children, young people and their parents all over the UK to make sure health research benefits and reflects everyone.”
Elizabeth Mordey, Senior Study Coordinator for D-CYPHR at the NIHR BioResource
If you would like to shape the future of childhood health research, you can join D-CYPHR online from home. They are actively looking for new ambassadors for 2024/2025, but any young person can take a stand for their health just by joining D-CYPHR as a participant with parental consent.
Families can join D-CYPHR to help children’s health research at:
