Guidance on development and operation of Young Persons’ Advisory Groups

Abstract

BackgroundEngaging patients and the public as collaborators in research is increasingly recognised as important as such partnerships can help improve research relevance and acceptability. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials. Until fairly recently, there was very little information available to guide the successful development and operation of YPAGs.ObjectiveTo develop an evidence-based tool to guide clinical researchers and triallists in the establishment and operation of a YPAG.MethodsAn online needs assessment survey was conducted using SurveyMonkey with 60 known paediatric drug researchers to identify knowledge gaps around YPAG engagement, development and operation. Semistructured interviews with founders and coordinators of five well-established existing YPAGs and a review of the literature were performed to identify best-practice processes for starting up and operating YPAG.ResultsThe majority of 12 survey respondents (20%) from 12 different centres indicated that while they felt YPAGs could benefit their research, guidance on how to develop and operate a YPAG was needed. Most preferred a web-based guidance tool. Ten core steps in starting up and operating a YPAG were identified and developed into an online YPAG guidance tool, now freely accessible for use by paediatric clinical researchers worldwide. Plans to evaluate the impact are in place.ConclusionsThis novel tool, developed with an internationally based group of public involvement leads working across paediatric clinical research areas, provides harmonised guidance for researchers seeking to develop and operate YPAGs to help improve the quality and impact of paediatric clinical research studies.

Involving adolescents in the design, implementation, evaluation and dissemination of health research: an umbrella review protocol

“…These findings will inform the development of guidelines on involving adolescents in health research. The need for a comprehensive set of guidelines and resources on involving adolescents in health research has been highlighted by youth researchers81 and studies 83 106–109. These guidelines will facilitate researchers to collaborate with adolescents more effectively, leading to more meaningful involvement of adolescents in research.…”

Teilhabe im Kinderkrankenhaus: Formate zur Verwirklichung des Rechts auf Partizipation von jungen Patientinnen und Patienten

“…In nur weniger als 1 % der gefundenen Studien wurden Kinder und Jugendliche beteiligt. Die jungen Menschen wurden in unterschiedlichen Phasen des Forschungsprozesses involviert, am häufigsten jedoch bei der Festlegung des Forschungsdesigns und der Datenauswertung [5] In einem Leitfaden zum Aufbau von YPAGs werden hierfür notwendige Schritte beschrieben: Neben der Definition des Ziels der YPAG, der Bestimmung des Forschungsanliegens und der Einwerbung finanzieller Mittel, sollte ein/e verantwortliche/r Koordinator*in identifiziert werden [7]. Koordinator*innen bestehender YPAGs, deren Feedback zur Entwicklung der Leitlinie verwendet wurde, betonen die zentrale Bedeutung der Rolle einer Person, die für die Rekrutierung von Teilnehmer*innen, Planung der Aktivitäten, Kontaktaufnahme mit Wissenschaftler*innen und den Austausch mit Entscheidungsträger*innen und Geldgeber*innen verantwortlich ist [7].…”

Young patients’ involvement in a composite endpoint method development on acceptability for paediatric oral dosage forms

“…In this project the adolescents and young adults aged 16–23 years that have contributed belong to the KIDS Barcelona Young Person’s Advisory Group (YPAG, for details please see Additional file 1 : GRIPP 2 Short form). YPAGs typically are formed of 10–20 members aged between 8 and 21 years and have experience of taking part in a clinical trial and/or have a chronic condition or have a general interest in health, research, and science [ 16 ]. The KIDS Barcelona group (which comprises 20 members in total) was established in 2015 by Sant Joan de Déu Research Foundation after having offered to its members a training in health diagnosis, clinical research, clinical trials, and innovation.…”