Outstanding patient and public involvement plan

Each year the NIHR Clinical Research Network (CRN): Mental Health has recognised a CRN supported study that is judged to have outstanding patient and public involvement (PPI).

Dr Redley and his research team took a number of steps that led to the development of the PPI plan for their Research for Patient Benefit (RfPB) study ‘The Hospital Experiences of Adults with Learning Disabilities (HEALeD)’.

Firstly, they successfully acknowledged the views that people with learning disabilities, their families and carers expressed in public reports such as Sir Jonathan Michael’s report of the Independent INQUIRY into access to healthcare for people with learning disabilities (2008).

Secondly, they reported, and incorporated into their research plan, the insights of three advocacy organisations that they had approached.

Thirdly, they included a Patient and Carer Advisory Group with a named leader with prior experience of service user involvement. They developed a timetable of meetings with the Patient and Carer Advisory Group at key intervals during the research to complete pre-identified tasks.

And finally, they sought advice from INsPIRE who commented and advised on their PPI plan.

INsPIRE is a health and social care PPI research group for Bedfordshire and Cambridgeshire. It was set-up in 2012 and its members are involved in commenting on grants, meetings, participation in projects and more.

The team held their first PPI meeting on Wednesday 22 April involving nine members of the public who are supportive of the team’s research aims.

The PPI members agreed that there definitely have been, over the past years, improvements in the quality of care for people with learning disabilities’ when in hospital, but that there was need for further progress

Dr Marcus Redley, Principal Investigator, said: “We are very pleased to receive this recognition which acknowledges the efforts of the research team. We hope that, through the PPI involvement, we will see improvements in healthcare received, by men and women with learning disabilities, and help them to become more involved in their own care.”

Find out more about why public involvement is important, how you can involve the public in your research and support available.

More articles     Posted on: 08 May 2015