How can we work with and involve children and young people in research? Whether you're a child or young person, or a health professional - we have collated the most useful resources from other organisations.
These resources complement the RCPCH Research Charter.
For young people and parents
Find studies that you or your child might find of interest or get involved in at UK Clinical Trials Gateway.
Nuffield Council on Bioethics has a number of resources:
- Involving children and young people in health research: getting it right - magazine
- Health research: making the right decision for me - video
- Children and clinical research: ethical issues - report summary (PDF)
For trainee paediatricians, nurses, consultants and SAS doctors
- Centre for Evidence-Based Medicine
- Clinical Research Network
- Critical Appraisal Skills Programme
- Ethical Research Involving Children
- Children and Clinical Research e-learning- Global Health Training Centre
- How to set up a journal club - London Links (PDF)
- Good Clinical Practice research training - NIHR
- Clinical Trials Toolkit - NIHR
- Involving CYP in Research: top tips and essential key issues for researchers - NIHR (PDF)
- Involving patients and citizens - National Voices (PDF)
- Research with children: methodological issues and innovative techniques - Queen’s University Belfast(PDF)
- Funding opportunities - Research Councils UK
Engaging children, young people and their families in research
- British Youth Council
- The Council for Disabled Children
- International Children’s Advisory Network
- UK Research and Innovation: Research Councils UK, Engaging young people in cutting edge research (PDF)
- National Children’s Bureau: Guidelines for Research with Children and Young People (PDF)
- Participation Works: How to involve children and young people in research
- RCPCH: Not just a phase
- Save the Children toolkits: So you want to involve children in research (PDF)
- Involving children and young people in the selection of staff (PDF)
- Children and Participation: Research, monitoring and evaluation with children and young people (PDF)
- The TRECA study: Trials Engagement in Children and Adolescents (PDF)
Nuffield Council on Bioethics:
- Report on Ethical Research with Children and Young People (PDF)
- Young people’s perspectives on clinical ethics reviews (PDF)
Involving children and young people in decision making in research
- Generation R have examples of how to gain consent (PDF)
- National Children’s Bureau have created Young People in Research: How to involve us (PDF)
- NHS England and the British Youth Council have created a bitesize guide to setting up a youth forum in health services across England (PDF)
- North West Leicestershire District Council: Guide to involving children and young people (PDF)
Supporting and communicating with children and young people
- Disability Matters has a range of free e-learning resources for professionals to support understanding disability and communication with disabled children and young people
- Healthtalkonline offers personal stories of health and illness to enable patients, families and health-care professionals to benefit from the experiences of others
- NHS England Youth Forum has created a range of resources about rights in healthcare including an easy read leaflet that talks about consent and confidentiality
- National Institute for Health Research: Children payment for participation report
Ethics and data confidentiality
- European Commission: Ethical considerations for clinical trials on medicinal conducted with the paediatric population (PDF)
- Medical Research Council: Ethics guide - medical research involving children (PDF)
- Useful elearning modules
- National Co-ordinating Centre for Public Engagement has several resources for working with young people
- National Society for the Prevention of Cruelty to Children: Research with children - ethics, safety and avoiding harm
- NHS Digital: Information governance
- Research Ethics Guidance: Information for the four nations
Other resources you may find useful
- BANNAR report: Summary of good practice when involving young people in health-related research (PDF)
- Bate, J et al. (2016). Public and patient involvement in paediatric research, Arch Dis Educ Pract Ed, 0, 1-4
- Decipher is focused on promoting health in schools and other youth settings
- European Patients' Academy has information to support understanding in medical trials
- Generation R have information about young people improving health through research
- Market Research Society: Guidelines for research with children and young people (PDF)
- National Coordinating Centre for Public Engagement: Resources for working with young people
- National Institute for Health Research (NIHR)
- INVOLVE supports active public involvement in NHS, public health and social care research
- National Youth Agency provides information about the Young Researchers Network
- Nuffield Council on Bioethics provides a variety of information on children and clinical research
- Open University's Children’s Research Centre evaluates how children and young people can benefit from designing, implementing and sharing findings from research
- Young Minds: Putting participation into practice
- United Nations International Children's Emergency Fund: Ethical research involving children
For more from RCPCH
For more information about research please contact the RCPCH Research & Evidence team at research@rcpch.ac.uk. Or, to find out more about involving children and young people contact: and_us@rcpch.ac.uk.