Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned

Preston, J ORCID: 0000-0003-4800-234X, Nafria, B, Ohmer, A, Gaillard, S, Dicks, P, West, L and Turner, MA ORCID: 0000-0002-5299-8656 (2022) Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned. THERAPEUTIC INNOVATION & REGULATORY SCIENCE, 56 (6). pp. 948-963.

Access the full-text of this item by clicking on the Open Access link.

Official URL: http://dx.doi.org/10.1007/s43441-022-00382-4

Abstract

Listening to, and acting on, the voices of children and families during clinical research and innovation is fundamental to ensuring enhanced pediatric health care, medicines development, and technological advances. While this is often discussed as an important step in ensuring patient-centered care, involving children and families across the life cycle of clinical research is not currently routine. The pediatric research community needs to address how to meaningfully involve children and families if they are to succeed in designing clinical research that suits the needs of pediatric patients and their families. This paper describes how an international community working under the umbrella International Children's Advisory Network (iCAN) and European Young Person's Advisory Group Network (eYPAGnet) has involved children and families in the design and delivery of pediatric clinical research. It offers practical solutions through various case studies assessed against seven patient engagement quality criteria within the Patient Engagement Quality Guidance (PEQG) tool, highlighting some of the lessons learnt from involving and engaging with children and families across different stages of clinical research, including pediatric trials for drug development programs.

Item Type:	Article
Uncontrolled Keywords:	Pediatric clinical research, Children, Families, Involvement, Patient-centricity
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	07 Mar 2022 11:02
Last Modified:	18 Jan 2023 21:11
DOI:	10.1007/s43441-022-00382-4
Open Access URL:	https://doi.org/10.1007/s43441-022-00382-4
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3150290