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Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric

J Preston1,2, B Nafria3, A Ohmer4

  • 1Faculty of Health and Life Sciences, Women's and Children's Health, Liverpool Health Partners, University of Liverpool, Liverpool, UK. jennifer.preston@liverpool.ac.uk.

Therapeutic Innovation & Regulatory Science
|February 19, 2022
PubMed

Insights

Meaningfully involving children and families in clinical research is crucial for pediatric health care. The International Children's Advisory Network (iCAN) and European Young Person's Advisory Group Network (eYPAGnet) provide practical solutions for patient-centered pediatric research.

Area of Science:

  • Pediatric clinical research
  • Patient and family engagement
  • Health innovation

Background:

  • Meaningful involvement of children and families in clinical research is essential for patient-centered care but not yet routine.
  • The pediatric research community must adopt strategies for effective child and family participation.
  • Current practices lack systematic approaches to integrate pediatric patient and family perspectives throughout the research lifecycle.

Purpose of the Study:

  • To describe how international networks have involved children and families in pediatric clinical research design and delivery.
  • To offer practical solutions and case studies for enhancing child and family engagement in pediatric research.
  • To identify lessons learned from engaging children and families across various stages of pediatric clinical trials.

Main Methods:

  • Utilizing case studies from the International Children's Advisory Network (iCAN) and European Young Person's Advisory Group Network (eYPAGnet).
  • Assessing patient engagement quality using the seven criteria of the Patient Engagement Quality Guidance (PEQG) tool.
  • Documenting practical solutions and lessons learned from real-world pediatric research initiatives.

Main Results:

  • Demonstrated successful involvement of children and families in the design and execution of pediatric clinical research.
  • Provided practical examples of patient engagement strategies applicable to drug development programs and other pediatric trials.
  • Highlighted the value of structured assessment tools like PEQG for evaluating engagement quality.

Conclusions:

  • Systematic engagement of children and families significantly enhances the relevance and success of pediatric clinical research.
  • International collaboration through networks like iCAN and eYPAGnet facilitates the implementation of effective engagement strategies.
  • Adopting quality guidance frameworks is key to ensuring meaningful and impactful patient and family involvement in pediatric health innovation.

Keywords:
ChildrenFamiliesInvolvementPatient-centricityPediatric clinical research

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