Patient and Public Involvement (PPI) in research means “Research being carried out “with” or “by” members of the public rather than “to” “about” or “for” them. PPI is a means of improving research by ensuring that those who are most likely to be affected by the outcomes of the research have an opportunity to contribute their experience in some way.

As a research team we believe strongly that it is crucial to involve patients and public in all aspects of the research process, particularly when the research involves marginalised groups of people, such as those with learning disabilities, whose views are rarely heard. Our aim is to ensure that any data collection involving children and young people and their families is carried out in an appropriate, accessible, sensitive and ethical manner.

To do this we have established a Parent Advisory Group and we are working with children and young people  to ask their views on different aspects of the study.

In addition PPI is integrated into the management of the study. One of the members of the Executive team was a co-applicant and provided significant input into the design of the study drawing on their experience as a parent of children with learning disabilities. They had previously worked with Dr Kate Oulton on the ‘Stop, Look and Listen’ study and provide PPI input at a strategic level and ensure that this is a factor that is considered when decisions are made. Two members of the Parent Advisory Group are invited to attend every Study Steering Committee meeting, which also comprises some members of the Core and Executive Research Teams. This helps to ensure strong links between the Parent Advisory Group and the wider study team.