Testing new UK standards for Public Involvement in Research in a Cerebral Palsy register

Claire Kerr, Karen McConnell, Helen Savage, Oliver Perra

Research output: Contribution to journalSpecial issuepeer-review


Background and objectivesThe UK National Institute for Health Research (NIHR) launched six draft ‘Standards for Public Involvement (PI) in Research’ in 2018. Following a process of competitive selection, the Northern Ireland Cerebral Palsy Register (NICPR) was identified as one of 10 ‘test-bed’ projects identified by the NIHR to pilot the PI Standards over a one-year period. This study describes the NICPR’s ‘test-bed’ experience, highlighting successes and challenges in embedding PI in cerebral palsy register research.Study designDescriptive study.Study participants and setting The NICPR is a confidential record of children with cerebral palsy in Northern Ireland covering over 40 birth years. The activity of the NICPR is informed and monitored by an Advisory Committee comprising paediatricians, voluntary services organisations, a parent representative and an adult with cerebral palsy. Materials / MethodsThree PI Standards were piloted by the NICPR. Standard 2, ‘working together’, was tested by recruiting a group of people with cerebral palsy, their families, friends and carers, to a PI group. This group developed terms of reference, defined what activities they would undertake and identified their training needs. Standard 4, ‘communications’, was tested by developing NICPR-related information using a variety of communication methods for various stakeholder groups, ensuring developed materials were ‘jargon-free’. Standard 5, ‘impact’, was tested by development of standardised evaluation processes to identify the impact of PI on the NICPR programme of research.ResultsStandard 2 was wholly achieved during the study timeframe: creation of a PI group was successful but time-consuming due in part to governance regulations and legal requirements in relation to data protection. Standard 4, ‘communications’, required significant input from the research team and PI group and was only partially achieved during the study period. Achievement of Standard 5, ‘impact’, whereby standardised evaluation processes were to be collaboratively developed, was not met during the study period due to the length of time required to initially convene the PI group.Conclusion / SignificanceThe UK NIHR draft PI Standards provided a useful framework for structuring and embedding meaningful PI in a cerebral palsy register programme of research. Sufficient personnel time (research and PI group) and dedicated, sustained funding for PI activities are required for Standards to be successfully met.
Original languageEnglish
Article numberT-A-SP05
Pages (from-to)129
Number of pages1
JournalDevelopmental Medicine and Child Neurology
Issue numberS3
Early online date17 Sept 2019
Publication statusPublished (in print/issue) - 1 Oct 2019

Bibliographical note

Conference code: 73rd
American Academy for Cerebral Palsy and Developmental Medicine Annual Meeting


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