Abstract: Aim: This scoping review aimed to describe the nature and extent of PPI in dementia research in the European Union (EU) and to summarise: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process.
Method: Relevant studies were identified by searching electronic databases. These included studies in the EU that had involved people living with dementia and/or their carers, and were published between 2000 and 2018.
19 studies were found in the UK and one from the Netherlands. No studies were found in other EU countries. The studies reported various ways of involving people, including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach.
The reported aims of the PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All the PPI related to non-drug studies. One report described two drug trials as case studies of PPI. Seventeen studies reported anecdotal impacts of PPI.
Further development of PPI in dementia research in the EU and in drug-related dementia research is required. Given the wide range of goals for PPI in dementia research, the approaches used should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public . This would help inform good practice and enable the benefits and challenges of PPI to be better understood.
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Categories: health nature and extent of public involvement in research journal article
Date Entered: 2019/11/06
Date Edited: 2019/11/06