For the past 18 years, the University has helped support research into conditions such as Covid-19, cancer, diabetes and depression using the samples of 30,000 volunteers from across Scotland.
The University of Edinburgh-led project requires volunteers to answer questionnaires and provide samples for genetic testing. This data is combined with NHS health records and innovative laboratory science to create a rich evidence base for understanding health.
Recruiting the next generation
The team behind the project is now aiming to recruit 20,000 more participants and are halfway through this goal. They are particularly keen to recruit more men and teenagers as only 2 per cent of the project’s volunteers are under the age of 20.
Sarah Robertson, the project’s Youth Engagement Lead, is responsible for encouraging young people to join the study by raising awareness of the importance of health research and reaching out to them using innovative methods, including attending and presenting at partnership events and working with the team to increase our social media presence.
“We need more young people to join so that we can support research into health problems that impact the younger generation, such as the pandemic and mental health issues,” she says.
“As a mum with two young children, I am particularly interested in how we improve health outcomes for young people in Scotland. So many health conditions start in childhood, in fact even earlier, so we need to include children and young people as early as we can.”
The project is now the first longitudinal study in the UK to welcome 12–15-year-olds to join remotely online without their parent or guardian needing to join first. This ensures young people have more ownership over their own health decisions, which in turn will help scientists and researchers to learn and improve young people’s mental health.
“Our sign-up process wasn’t very young person friendly at the start, but we worked with young people to change it and our new systems give young people more ownership over whether they choose to join or not,” Sarah explains.
“This has gained us recognition across Scotland as an excellent example of children’s rights in health research.
“There needs to be awareness of health research, but also trust in the research and positive healthy relationships among practitioners and young people.”
Creating meaningful change in public health
Sarah has also established a youth person’s advisory group (YPAG) to help shape a large study into Loneliness in the Digital World. The study is co-created by young people across Scotland and has assisted Generation Scotland in removing participation barriers for young people, enabling them to independently choose to join the study through a more rights-based approach.
She has recently received seed funding to create a larger mental health youth voice within the University. This involves working with schools and youth organisations across Scotland to become Health Research Champions to help guide the work.
Sarah says: “I joined Generation Scotland to become a part of a research community, bringing everyone together, and creating spaces for young people to truly be heard and take an active role in research that is important to them.
“I love when we see real health change taking place, particularly when communities and young people are meaningfully included in that change and seen as experts in the journey. My aim is to raise awareness about health research, data science and involve young people, health ambassadors and their schools/youth programmes in educational activities relevant to the school curriculum.”
Find out more
By joining Generation Scotland, University staff and their friends and family can have a voice and take part in health research which will improve the wellbeing of people across Scotland. Parents of young people aged 12 to 15 still need to confirm their child understands what they are consenting to by joining the study.
Anyone over the age of 12 can become a volunteer through Generation Scotland’s online portal.
For more information, email: sarah.robertson@ed.ac.uk