Patient and public involvement

RCPCH and the British Paediatric Surveillance Unit (BPSU) are committed to ensuring that patient and public involvement (PPI) is embedded in all of its workstreams, and provide guidance to investigators on PPI.

Guidance for BPSU researchers

The BPSU Scientific Committee, particularly its lay members, provides support for researchers to facilitate effective PPI from the start of a study to the dissemination of the findings several years later. 

BPSU has produced a guidance document for researchers on how to involve patients and the public in their research. PPI is especially important in research that does not involve individual consent, as carried out by researchers undertaking studies through the BPSU, to ensure openness, transparency and accountability to the public.

More about BPSU and PPI

Guidance on clinical research involving infants, children and young people

The Archives of Disease in Childhood had produced guidance about the ethical conduct of medical research involving children. The College built on this foundation to update the guidance, in order to encourage high quality research in paediatrics and ensure that children and young people are involved with research and its benefits.

ADC article - An Update for Researchers and Research Ethics Committees

Full report - Guidance on Clinical Research Involving Infants, Children and Young People: an update for researchers and research ethics committees (PDF, 679KB, 19 pages) 

Research involving paediatric patients

The College has worked closely with the Royal College of Nursing and the Medical Research Council to develop route maps (PDF) specific to the involvement of children and young people in qualitative research. 

The group are also pleased to announce that the RCPCH research ethics writing sub-group will be updating the research ethics guidance (2000) report (PDF, 100KB). 

Useful links

Infant, children's and young people's research charter - guiding principles for working with and involving CYP in research

Information resources for parents and carers - including Medicines for Children, MindEd for Families and infoKID

Public information leaflets on rare conditions - run through the British Paediatric Surveillance Unit

Rare Disease Day Event - bringing together patients, researchers and healthcare professionals