Health and Social Care Research & Development (HSC R&D) Division, based at the Public Health Agency, in Northern Ireland is part of a UK wide commitment to improving Personal and Public Involvement (PPI) in research. This shared commitment brings organisations together to strengthen how the public is involved in research, ensuring their voices shape decisions. A key part of this effort is the UK Standards for Public Involvement, which provide a framework to support meaningful engagement, encourage learning, and promote best practices.
The Northern Ireland Cerebral Palsy Register (NICPR) based at Queen’s University Belfast was selected as a test-bed to pilot the UK Standards for Public Involvement in 2018/19. Since then, Dr Claire Kerr and Dr Karen McConnell, and their research team at Queen’s University Belfast have continued to apply the six public involvement standards in their research as they believe the Standards provide a useful framework to plan and evaluate PPI activities.
A recent example of how the Standards influenced the PPI work of the NICPR was in the development, production and dissemination of evidence-based resources about sleep disturbances in children with cerebral palsy. The Queen’s University team secured funding to co-produce these resources with a group of parents and young people with cerebral palsy. The group was brought together specifically for the project. The roles and expectations of the group were discussed and agreed at the start of the project. Choices in meeting times, formats and ways to provide advice and feedback were provided so that everyone could get involved. The group’s ideas about who the resources should be for, as well as the content, design and how to share the resources were recognised and prioritised. Group members were recompensed for their time and expertise and gave feedback on their PPI experiences on the project. PPI in this project embedded the Standards from the outset and applied them alongside learnings from previous projects. By creating opportunities for the PPI group to regularly provide feedback on project progress and their experiences on the project, the NICPR research team could monitor the quality of their PPI processes.
As well as adopting the UK Standards in their research, the NICPR has worked with HSC R&D and partners to ensure that PPI contributors have access to appropriate training and resources to support their involvement in research. This includes use of the HSC R&D PPI resource library and attendance at the HSC R&D’s Building Research Partnership’s Training. The NICPR team are active members of the Queen’s University Personal and Public Involvement in Research (PPI) Network and have promoted their involvement with the UK Standards through that group. In partnership with their PPI members, the NICPR team has written about their PPI experiences and shared those at international conferences. Queen’s University Belfast has also partnered with HSC R&D to facilitate PPI training to first year PhD students enrolled at the School of Nursing and Midwifery.
The NICPR team at Queen’s University Belfast acknowledge that meaningful PPI can be challenging. PPI members told the research team to make getting involved in research less complicated and to avoid jargon and academic language. PPI members wanted clear information in advance about what their involvement might look like, and the time commitment required for a project. They also wanted to see tangible outputs that were relevant and useful to them and/or their family members. Meaningful, sustained PPI enhances the quality of research but requires investment of time and resources on the part of researchers and PPI members. The NICPR research team believe that by embedding the UK Standards for Public Involvement in their work, they have improved the quality, accessibility and relevance of their research. Their PPI members have reported personal benefits such as increased knowledge and confidence, and empowerment in sharing their experiences.
Bob McAlister, the longest serving PPI member on the UK Standards Development Group was at Friends House, Euston, London when the 10 UK Test Beds reported on their “trial year' of using the Standards. He said, “The NICPR presentation that day stood out for me because the public member led the feedback session. At this time the UK Standards continue to evolve, they remain the bedrock for PPI and I am delighted that Dr Janet Diffin in HSC R&D, Northern Ireland, now chairs our UK Five Nations Standards sub group.”
Martin Quinn, the Public Health Agency’s Regional Health and Social Care Personal and Public Involvement Lead, said he was very pleased how the Standards for Public Involvement (which were co-produced with HSC partners and service users and carers) had been used in this research. Martin noted that the Standards were clearly integrated into the culture and practice of NICPR’s work as an integral component, and exactly how the Standards were intended to be applied.
Caption: Members of the Queen’s University Belfast ‘Sleep Resources for Cerebral Palsy’ PPI Group.