Implementing public involvement standards in cerebral palsy register research

Claire Kerr, Karen Mc Connell, Helen Savage, Monica Acheson

Research output: Contribution to journalArticlepeer-review

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Abstract

Background: In 2018, the National Institute for Health Research launched Draft
Standards for Public Involvement in Research. The Northern Ireland Cerebral
Palsy Register (NICPR) was competitively selected as a “test-bed” project to
pilot the Draft Standards over a one-year period.
Aim: This perspective paper aims to describe the NICPR’s experience of
piloting the Draft Standards for Public Involvement in Research, highlighting
successes and challenges.
Method: Three of the six Draft Standards were piloted from April 2018 to April
2019: Standard 2 “working together”, Standard 4 “communications” and
Standard 5, “impact”.
Results: Implementation of Standard 2 resulted in formation of a dedicated
Public Involvement Group. Standard 4 was implemented by revision of the
NICPR’s Privacy Notice and development of the NICPR website. Standard 5
was not implemented during the test-bed pilot period.
Discussion: Benefits of use of the Draft Standards in cerebral palsy register
research included development of relationships, improving quality,
accessibility and relevance of NICPR materials, increasing skills and
confidence, networking opportunities, advocating for others and feeling
empowered to shape cerebral palsy research. Challenges included
administrative issues, absence of dedicated and sustained funding, limitations
in the availability and applicability of public involvement training and the time
required for meaningful public involvement.
Conclusions: Standards for Public Involvement provide a useful framework for
structuring and embedding meaningful public involvement. Sustained,
authentic public involvement in cerebral palsy register research ensures that
people affected by the condition are empowered to engage, inform, develop
and lead research that meets their needs.
Original languageEnglish
Article number903167
Number of pages6
JournalFrontiers in Rehabilitation Sciences
Volume3
Early online date17 Nov 2022
DOIs
Publication statusPublished online - 17 Nov 2022

Bibliographical note

The NICPR is funded by the Northern Ireland Public
Health Agency

Keywords

  • public involvement
  • cerebral palsy
  • register
  • standards
  • Experience

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