International Children’s Advisory Network: A Multifaceted Approach to Patient Engagement in Pediatric Clinical Research

Abstract

Pediatric youth advisory groups were created to provide insight and guidance to the clinical research community. Such efforts have become a priority and parallel the demand for patient-centered health care. While steps are being made to integrate the patient voice into research, there remains a lack of pediatric-specific engagement in the development of pharmaceuticals and in clinical research. For example, a significant number of children are still treated with medications that are not approved for use in this age group, due to a lack of clinical trials involving younger children and neonates. The American Academy of Pediatrics noted that physicians are faced with an ethical dilemma, as they must frequently either not treat children with potentially beneficial medications or treat them with medications based on adult studies or anecdotal empirical experience in children. By improving the approach to pediatric study design, indications for pediatric-specific therapies can be developed. We describe a structured organization with empowered youth and parents who are beginning to play a key role in the research process that suggests ways to improve pediatric research and for innovative medical products to be more "child friendly" and usable. We will also describe how investigators can engage the International Children's Advisory Network to obtain valuable youth perspectives on many aspects of clinical research and health care advocacy.

Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

“…Our aim is to develop a bespoke PPI initiative to engage and learn directly from children and adolescents living with arthritis. Young people advisory groups (YPAGs) are becoming more common; indeed, the International Children's Advisory Network was established in 2015 as an international network for YPAGs to increase their voice and impact on paediatric medicine and research . There are examples of adolescent involvement in clinical and social care research, but less so in biomedical research .…”

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

“…The International Children's Advisory Network (iCAN) provides support for such a possibility (Gwara, Smith, Woods, Sheeren, & Woods, 2017;Thompson et al, 2015). iCAN is a global consortium comprised of young patients and their families with a goal of providing paediatric patient voice on higher-level decision-making processes, such as regulatory agencies and pharmaceutical companies in the development of clinical trials and therapeutics.…”

How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR

“…Children are considered to be vulnerable research study subjects and in recent years, more attention has been paid to their own voice in the process of consent and participation in scientific research (1,2). Different taskforces were established to promote scientific research in children and to support scientists to do this in an ethical way (3)(4)(5)(6). The European Pediatric Investigations Plans, for example, resulted in a positive impact on pediatric drug development (7).…”