ArticleResearch involvement and engagement2025
A multi-person reflection on using public and patient involvement and engagement to develop dementia research.
Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed.
- "Co-production is catnip to my brain. I need it and I would be in care otherwise": a call for action for researchers to safeguard the integrity of co-production in dementia research.Research involvement and engagement · 2026Article
- Involving People With Dementia in Research: Contributions, Barriers and Evaluation From a Meta-Synthesis and Qualitative Interview Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Evaluation of the impact of patient and public involvement on doctoral students in palliative dementia care research.Research involvement and engagement · 2025Article
- "We're all in it together": uniting a diverse range of professionals and people with lived experience within the development of a complex, theory-based paediatric speech and language therapy intervention.Research involvement and engagement · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Involving people living with dementia in the development of research through PPIE is the gold standard for ethical research. Established PPIE groups have been set up throughout the UK to provide people with dementia opportunities to have their voice heard. However, accessing these groups as a doctoral researcher can be difficult, and little guidance is given on how to make the process successful. Additionally, many people living with dementia are unaware such groups exist, and thus don't benefit from getting involved. In response, this paper summarises the PPIE process taken to develop a piece of doctoral research. Uniquely, this project involved collaboration with an individual living with dementia who was previously unfamiliar with research practices, and their friend. In this paper we present our shared experiences of the PPIE process, the benefits we all received, and the challenges we encountered. We combined a practical PPIE framework with an appreciative research approach to reflect on concepts such as ethical dilemmas and how these impact on participation. We conclude by offering practical tips on how to create a meaningful PPIE process to encourage other doctoral researchers to collaborate with people living with dementia in their research.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.