Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study
Open accessPublished version of a preprint
Abstract
Abstract Health research increasingly incorporates public and patient involvement (PPI) to enhance trial inclusivity and relevance, and it is often mandated by funding and regulatory bodies. PPI boosts public engagement with trials and aligns trial objectives more closely with the priorities of the groups they aim to benefit. The Kid’s Trial, an online randomised trial co-created with children, aims to help them better understand what randomised trials are, why they matter, and improve their critical thinking skills. To ensure inclusivity and relevance, we established two PPI groups: the Children’s Research Advisory Group (CRAG) and the Parents’ Research Advisory Group (PRAG). We recruited a representative sample of children and caregivers from diverse ethnic, geographic, and socioeconomic backgrounds to reflect the trial’s target demographic. We engaged advisory group members through social media and email campaigns aimed at caregivers of children aged 7 to 12. CRAG and PRAG meetings were conducted online, followed set agendas, and included real-time trial updates, post-meeting feedback surveys, and polls. A PPI compensation plan was established in advance. Online interviews with CRAG and PRAG members later captured their insights and experiences as PPI contributors for The Kid’s Trial. Seven family units, comprised of eight children and seven caregivers, were recruited over 15 weeks from six countries. PPI partners shaped the trial design by contributing to website animations, aesthetic changes, and language adaptations. Interviews were analysed using reflexive thematic analysis to explore the facilitators, challenges, and outcomes of participating in our online research advisory groups. Reflections from researchers and PPI partners demonstrated that participation in the advisory groups enhanced children’s learning and confidence. Many members, including children and adults, experienced unexpected positive outcomes, for example, increased scientific literacy, science communication and confidence. Their involvement meaningfully shaped the development and processes of the trial. This study also provides guidance for researchers engaging similar demographics in future PPI activities.
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Common pitfalls to meaningful PPIE include over-reliance on online methods or recruitment strategies dependent on researchers' personal or professional networks, which may introduce bias and reinforce exclusion.
“Common pitfalls to meaningful PPIE include over-reliance on online methods (despite one third of the world’s population lacking internet access) [30] or recruitment strategies dependent on researchers’ personal or professional networks, which may introduce bias and reinforce exclusion [31].”
From Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial (2026) · cites this paper as [31]
The Methods and Recruitment sections (pages unavailable) say the researchers used personal and professional networks and recruited most participating families through them. Study strengths and limitations identifies potential selection bias among the four adults interviewed, but does not attribute that bias or exclusion to network-based recruitment; it attributes exclusion to the online format. The online-methods clause in the citing sentence is attached to a different citation. (LLM, conf=0.82)
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Lowers, V., Stanley, M., Hennessy, J., Morgan, E., Horsley, R., Vithlani, J., & Harris, R. V. (2026) · Research involvement and engagement · doi:10.1186/s40900-026-00857-w
“…Dental research meaningful PPIE include over-reliance on online meth-ods (despite one third of the world’s population lacking internet access) [30] or recruitment strategies dependent on researchers’ personal or professional networks, which may introduce bias and reinforce exclusion [31].”
- Authors
- Lepage, S., Whelan, B., Flight, L., Totton, N., & Devane, D.
- Affiliations
- Ollscoil na Gaillimhe – University of Galway (IE)
- National Institute for Health and Care Excellence (GB)
- University of Sheffield (GB)
- Corresponding author
- Lepage, Simone
- Venue
- Research Involvement and Engagement
- Published
- 2025-07-01
- Volume
- 11
- Issue
- 1
- Pages
- 72-72
- ISSN
- 2056-7529 (ISSN-L)
- PMC
- PMC12220250
- OpenAlex
- W4411857771
- Cited by
- 5
- References
- 30
- Citations by year
- 2026: 5
- FWCI
- 6.18
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Research Involvement and Engagement (publishedVersion, cc-by-nc-nd)
- Research Square (acceptedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Health Research Board (HRB-TMRN-2021-001)
- College of Medicine, Nursing and Health Sciences, University of Galway
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Sociology and Political Science › Children's Rights and Participation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Keywords
- patient and public involvement, critical thinking skills, scientific literacy, science communication, children aged 7-12, social media recruitment
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