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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.

Shaping Research with Children, Young People, and Families: Our PPE Commitment 

At EATC4Children, our Patient and Public Involvement and Engagement (PPIE) strategy is at the heart of everything we do. We are deeply committed to ensuring that all our research and activities are shaped with and for children and young people (CYP) with childhood arthritis and related musculoskeletal conditions, as well as their families.

Our strategy is wide-reaching, inclusive, and co-developed with CYP and families who have lived experience. It is reviewed annually to ensure it remains responsive to their evolving needs and priorities.

We work across the entire EATC4Children geographical footprint, strengthening partnerships with community groups and key stakeholders to ensure diverse voices are heard. CYP and families are actively involved in all stages of research, from small-scale studies to flagship projects like STAR JIA, Target Lupus, Reflect, Myoscope, and WORD Day. Their contributions span roles such as co-investigators, steering group members, focus group participants, and collaborators in priority-setting and dissemination planning.

To support meaningful involvement and engagement, we provide tailored guidance and coaching to CYP and families, helping them build the skills and confidence to contribute effectively. We also support researchers in embedding PPIE throughout the research lifecycle, from funding applications to dissemination. Our young contributors regularly present at national and international events, such as the British Society of Clinical Pharmacology Symposium, where a young person co-presented with our PPI Officer.

Our Advisory Groups

Generation R Liverpool

Established in 2006 as the UK’s first young person’s advisory group for health research, GenerationR Liverpool offers CYP aged 10+ a platform to shape paediatric research and clinical trials. The group meets monthly online and holds four in-person training sessions annually. Members also take part in workshops, conferences, and science events. Interested young people can contact us at eatc@liverpool.ac.uk for an application form.

Generation R Parents group

Formed five years ago, this group brings together parents from across the UK to contribute to research design and delivery. Meetings are held virtually and are welcoming, engaging, and diverse. Parents with lived experience of chronic illness or general healthcare are encouraged to join and share their perspectives.

WORD Day: Raising Global Awareness

World Young Rheumatic Diseases (WORD) Day, held annually on 18 March, is an international campaign to raise awareness of paediatric rheumatic diseases. Since its launch in 2019, WORD Day has grown to include global events, webinars, and social media campaigns supported by organisations like the Paediatric Society of Europe. Learn more at www.wordday.org.

Promoting Good Practice

We champion effective PPIE through the UK Standards for Public Involvement and child-rights-based frameworks. Our work is shared through blogs, newsletters, and presentations at national and international forums, including:

  • Paediatric Rheumatology European Society (PReS) 2023 & 2024
  • British Society for Rheumatology (2023, 2024)
  • British Society of Clinical Pharmacology (2024)
  • EULAR 2024
  • Juvenile Inflammatory Rheumatism (JIR) Cohort Meeting (2023)
  • National Paediatric Clinical Trials Meeting in Pharmacology (2024)

We also contribute to international working parties (e.g., PReS Working Parties), guideline development (e.g., BSR Lupus Guidelines), and 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 PPIE team has co-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.