Impact of involving people with dementia and their care partners in research: a qualitative study

Objectives We aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme. Design We used monitoring forms to record the impact of the research programme's PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI. Setting We evaluated Research User Groups (RUGs-older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites. Participants We purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work. Results Impact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia. Conclusions PPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.