The National Institute for Health and Care Excellence (NICE) published guidance on Babies, Children and Young People’s Experiences of Healthcare in 2021.1 Seventeen systematic reviews provided evidence for recommendations, covering topics ranging from communication preferences to involving children and young people (CYP) in designing healthcare provisions. The United Nations Declaration on the Rights of the Child2 sets out a right for children to be consulted on matters that affect them, supporting a societal trend towards including children in governance.3 The NICE guideline committee therefore included young people who provided context and commentary on research evidence from their own experiences4 and was further informed by focus groups of children. This helped both in understanding evidence and phrasing recommendations, and in addressing questions important to the young people where there was a lack of research that drew on CYP’s experiences of healthcare. In this viewpoint, we provide an account and critique of these gaps, in the context of children’s rights to epistemic justice, with recommendations for researchers, practitioners, funders and ethics committees.

A persistent difficulty in creating recommendations was the scarcity of research evidence. Aware of the importance of CYP’s rights to a say in their own care,5 review inclusion criteria required that selected papers draw their data from under-18s (full protocols are available in the guideline documentation1). Across the topics, this meant a large number of papers were excluded from reviews for any one of three reasons:

Despite their focus being the healthcare of CYP, they did not study those experiences but rather that of others such as parents or professionals.

Data from CYP were mixed in with that of adults such that it could not be separated out.

CYP were represented through adult proxies, even on topics where, with some adaptation, they would have …