Patient and public involvement in developing study applications for the ‘Dementia Themed Call’ for research: What lessons did we learn?

2012 Conference

Abstract: In 2011, the NIHR (National Institute for Health Research) issued a call for research proposals about dementia for potential funding. DeNDRoN offered researchers various kinds of support, including help with patient and public involvement (PPI) to plan their proposals. The main involvement was DeNDRoN focus groups, discussing how to make studies more doable, and ideas around recruiting participants. DeNDRoN found patients and carers through its Local Research Networks. We mainly involved carers, but careful preparation allowed us to involve people with cognitive impairment. We worked well with the Research Design Service and the Alzheimer’s Society. We wrote up detailed written reports for each study.

Although researchers were encouraged to attend, it wasn’t compulsory; only half the studies we looked at had researchers present. Researchers often seemed nervous in presenting to a focus group, but their presence made them more successful. It became clear how much some researchers valued DeNDRoN’s help to communicate complex science to lay people. They made several changes to study designs as a direct consequence. This strengthens the evidence for impact of PPI in dementia research.