Public and patient involvement and engagement
EATC4Children brings together children, young people, and their families to add their experiences and voices to the development of our research.
Our public engagement team is committed to establishing links with patients, their families, and other stakeholders to ensure our research is visible, accessible, and informed by the experiences of those effected by arthritis in children.
Sammy Ainsworth is the Young People and Family Research Co-ordinator for the EATC4Children. Her role is to involve parents and young people in the design and dissemination of research and healthcare. Sammy runs the young person research advisory group, Generation R and the Generation R Parents Research Group. As Patient and Family Research Co-ordinator, Sammy supports wide variety of clinicians in their research and brings families and parents together to ensure that their voice is at the heart of the EATC4C. You can contact Sammy here.
Generation R Liverpool
Generation R Liverpool is an advisory group for young people. It offers a platform where they can learn about and provide input on various aspects of paediatric research and clinical trials. This group assists researchers in enhancing the development and delivery of health research.
Established in 2006, Generation R Liverpool was the first of its kind in the country. Children and young people aged 10 and above can apply to join the group. By becoming a part of this lively and enthusiastic team, they can help to ensure that research is designed in the right way for families. The group holds monthly online meetings after school and college, along with four in-person training sessions during the year.
Generation R members are often invited to participate in interesting workshops, conferences and science events. The group is friendly, lively and varied. Any young person who might be interested in joining can reach out to the EATC4C coordinator, Sammy Ainsworth, via email at jenny.ainsworth@liverpool.ac.uk for an application form.
Generation R Parents group
The Generation R Parents group was established five years ago with the aim of involving parents and providing them the opportunity to be involved in the design of research. The group convene through virtual meetings and is made up of parents from all over the UK. The meetings are always varied, engaging and welcoming. The members come from different backgrounds- some parents have children with a chronic illness, while others have more general experience with the UK medical system. All views and ideas are welcome and always valued.
If you are interested in joining the group and learning more about paediatric research, please get in touch with Sammy Ainsworth, PPI Coordinator by email jenny.ainsworth@liverpool.ac.uk.
WORD Day
World young rheumatic disease day, known as WORD Day, takes place on 18 March each year. This international awareness campaign was initiated in 2019, and it has since grown to encompass a wide variety of events both online and in person worldwide. These events take place across the globe, raising awareness and helping to educate on paediatric rheumatic diseases.
Two major international webinars are held each year with a panel-members made up of parents, young people, health professionals and clinicians. Over 200 people have attended these sessions from across the world, taking part in discussions and debates which have involved research, rheumatology treatments, vaccinations and the impact of COVID -19. The campaign has been supported by the Paediatric Society of Europe and has an extremely successful social media campaign that reaches out across the globe. To learn more, you can visit their website at www.wordday.org