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Public and patient involvement and engagement

Public and patient involvement and engagement (PPIE) are central to our mission at EATC4Children as we bring together children, young people, and their families to add their experiences to the development of our research and ensure that their voice is at the heart of the EATC4C.

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 affected by arthritis in children. Strengthening our partnerships with community groups and championing diverse representation underpins all aspects of our work.

Our young person research advisory group, Generation R, and the Generation R Parents Research Group, involve parents and young people in the design and dissemination of research and healthcare. You can contact our public engagement team at eatc@liverpool.ac.uk.

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 us at eatc@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 giving them the opportunity to contribute to the design of research.

The group is made up of parents from all over the UK and convenes through virtual meetings. Meetings are always varied, engaging and welcoming. Members come from different backgrounds, with some being parents of children with a chronic illness, whilst 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 at eatc@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, and vaccinations. 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

Promoting Good Practice

We promote shared understanding of effective PPIE using the UK Standards for Public Involvement and child-rights-based frameworks. We do this through regular blogs and newsletter updates, as well as presenting our work at national and international forums, such as:
• Paediatric Rheumatology European Society (PReS) 2023 (Rotterdam) and 2024 (Gothenburg)
• British Society for Rheumatology (2023, 2024)
• British Society of Clinical Pharmacology (2024)
• EULAR 2024
• Juvenile Inflammatory Rheumatism (JIR) Cohort Meeting (Switzerland, 2023)
• National Paediatric Clinical Trials Meeting in Pharmacology (Liverpool, 
2024)

We also continue to engage with international working parties (e.g., the PReS Working Parties), contribute to guideline development (e.g., BSR guideline for Lupus), and support platforms such as the Clinical Studies Group (CSG)

Publications

We continue to contribute to the wider academic and professional landscape through publications and thought leadership. These contributions help shape best practice and strengthen understanding of meaningful involvement, particularly in paediatric research settings. This year, the team has authored or contributed to the following key PPIE-related publications:

Preston, J., Ainsworth, S., Bortey, L., Lambert, L., Lappin, E., & Maxwell, N. (2024). Children and Young People and Research. In Minogue, V., & Salsberg, J. (Eds.), Meaningful and Safe: The Ethics and Ethical Implications of Patient and Public Involvement in Health and Medical 
Research (pp. 120–153). Ethics International Press. This chapter explores ethical and practical considerations for involving children and young people in research, grounded in lived experience and evidence from EATC4Children.

Preston, J., Dews, S.A., Evett, S., Bassi, A., Barrick, D., & Ainsworth, S. (2024). Co-designing pediatric clinical trials with multistakeholders: A step-by-step approach. In Gasthuys, E., Allegaert, K., Dossche, L., & Turner, M. (Eds.), Essentials of Translational Pediatric Drug Development: From Past Needs to Future Opportunities. This chapter provides a practical framework for multistakeholder co-design in paediatric trials, including tools and strategies based on real-world implementation.

Dews, S.A., Daley, R., Bansal, A., Preston, J., Bohm, N, (2024). The power of language: how to bridge the gap between healthcare research and patients – a scoping review. This publication examines how language shapes relationships between researchers and patients, and offers guidance on improving communication to enhance inclusion, trust, and engagement in research.

Siddiq S, Ainsworth JS, Pain CE, Smith EMD, Zhao SS, Hughes DM, McCann LJ. Involving young people in research investigating comorbidity associated with childhood-onset rheumatic disease: perspectives of a series of focus groups. BMC Rheumatology, 2025; 

Singhal S, Smith EMD, Roper L, Pain CE. The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure. BMC Rheumatology. 2022.