Patient and public involvement in dementia research in the European Union: a scoping review

Abstract

Background Internationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (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. Methods Relevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English. Results We found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of 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 PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI. Conclusions Further development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods 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 using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood. Trial registration PROSPERO 2017: CRD42017053260 . Electronic supplementary material The online version of this article (10.1186/s12877-019-1217-9) contains supplementary material, which is available to authorized users.

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

“…Alzheimer Europe's position statement on PPI in research outlines the potential for wide-ranging activities for people with dementia and those that support them, such as acting as consultants, identifying research topic priorities, contributing to ethical debates, interpretation of findings and dissemination (Gove et al, 2018). The research agenda has already benefited from the involvement of people with dementia and their supporters, especially in the UK (Bethell et al, 2018;Miah et al, 2019).…”

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study

“…To ensure the relevance of research outcomes to older people with dementia, it is vital the views of older people with dementia are taken into account when designing research [ 2 , 3 , 6 – 8 ]. There is a small but growing literature on the methodology and impacts of involving people with dementia in dementia research [ 7 , 36 ]. Previous reviews of PPI in health research have recognised a lack of reporting of the impact and benefits of PPI, and where studies have described the impact of PPI, the quality of the evidence is low [ 37 – 40 ].…”

“…The need is particularly acute in the case of involving older people with dementia and age-related hearing and/or vision impairment in health research. Very few studies have described and evaluated patient and public involvement with older people with dementia [ 7 , 19 , 21 , 36 , 42 – 44 ].…”

Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience

“…Review bodies such as the UK based Health Research Authority (HRA) and many funding bodies strongly encourage such PPI activities as part of a applications, and the INVOLVE network has been established in the UK to support integration of PPI into health and social research (3,4). However, while PPI initiatives are well established in the UK, there is less experience in many other European countries, although patient-run charities, for example, have been in uential partners in setting research agenda, and recent initiatives such as EUPATI aim to develop opportunities for patient involvement in clinical trials and health technology assessment (5)(6)(7)(8). In the case in dementia research, a scoping review of European PPI activities in dementia research, found that they were concentrated in the UK, with 19 projects identi ed, compared with 1 from the Netherlands and none elsewhere (4).…”