Infants’, Children’s and Young People’s Child Health Research Charter
Providing guiding principles for working with and involving children and young people in research
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What is the Charter?
— RCPCH (@RCPCHtweets) 1 July 2016
Working with children, young people, parents, carers and healthcare professionals, the RCPCH developed the Infants’, Children’s and Young People’s Child Health Research Charter to provide guiding principles for anyone; whether that be a child, young person, parent, doctor, nurse, allied healthcare professional, researcher or anyone working with and involving children and young people in research.
Why have we developed the Charter?
The Charter is one of the commitments the RCPCH made in the Turning the Tide report and builds on the work of the Nuffield Council on Bioethics, Generation R, National Institute of Health Research, the National Children’s Bureau, UNICEF and more.
The Charter aims to support children, young people, families and health professionals to talk about child health research and guide discussions to ensure everyone is clear on what is happening, when and why child health research is important.
Why do we need a Charter?
Child Health Research is important and the RCPCH supports the need for clinicians to involve children and young people in research and discussions surrounding this. We have worked with young people, parents and carers and other relevant professional and lay groups to ensure the Charter sets out the ways in which children, young people and their families can be actively involved and support research in order to better understand the biology of their health and disease.
Just as importantly, the Charter stresses the critical importance of ensuring that research evidence is incorporated in a timely way into national clinical guidelines and policies, and that these are implemented, audited, and evaluated.
What is available?
- (PDF, 1MB, 1 page) - A downloadable poster which you can print and display in your office or clinic
- (PDF, 1.3MB, 12 pages) - A guide to everything you need to know about the child health research charter
- - A list of tools, resources, e-learning and further guidance from a range of organisations across children's services and child health sectors which you may find useful when thinking about or undertaking child health research
Children and young people said…
“It would be good to have children and young people’s experience of research to hear about. If they tell each other [young people], it’s the same way they say it, the same understanding and they had the same experience.”
“You need to make it clear communication that is face to face. Explain it person-to-person. Give a leaflet only at the end but read it with them but don’t just give it to them to read what if they have language barriers or the interpretations are different.”
“The how you explain it should be like talk about safety, the process, the explanation, the outcomes and the positive benefits to the world.”
“You should use positive words like “opportunity” and “innovation” not research or trial.”
“This is a reach great set of principles, that if followed will make research for children and their families worthwhile, safe and empowering.”
Thank you for your support!
The Charter has been supported by a range of organisations
Nuffield Council on Bioethics
"The Council welcomes the RCPCH Infants', Children’s and Young People’s Child Health Research Charter which reflects much of what we heard from young people, parents, researchers and health professionals in our own evidence gathering on the ethical issues around involving children and research. This included the importance of actively involving children and young people in the process of making a decision about research; of good communication and clear, accessible information to support informed decision making; and of researchers engaging with the views and experiences of young people and their parents in the design and review of research.
"In our report Children and clinical research: ethical issues we concluded that involving children, young people and their parents at all stages of the research process can help to minimise the risk of children being placed in a situation that makes them vulnerable, and ensure that research is more suited to their needs. We are pleased to see RCPCH taking this agenda forward in such a positive way."
"Reviewed and assessed by UNICEF Office of Research Innocenti as compatible with UNICEF mandatory procedures on research ethics.
International Children’s Advisory Network
“The Infants', Children's, and Young People's Child Health Research Charter is wonderfully precise and succinct, and it clearly addresses the major challenges to pediatric research. The charter provides much needed guidance on best practices for engaging young people and their families in health research, and goes further to provide readers with an External Resources Guide. We appreciate that the charter was written with collaboration from children and it maintains their interests throughout. We hope that every pediatric health professional has a chance to use this resource.”
For more information or advice about research please contact the RCPCH Research and Evaluation Team at firstname.lastname@example.org, or to find out more about involving children and young people contact email@example.com.
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