ReviewHealth expectations : an international journal of public participation in health care and health policy2021
Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.
Review in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 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
12 citing papers in PubMed.
- Co-Design of a Community of Practice for People With Personal and Professional Expertise or Interest in Dementia in Australia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- National and international models of involving people with lived experience in dementia policy, advocacy and research.Frontiers in dementia · 2026Article
- Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium.Frontiers in medicine · 2026Article
- An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.Scientific reports · 2025Article
- "This also matters to me": what does adherence to dementia risk reduction interventions mean to members of the public?Aging clinical and experimental research · 2025Review
- Informed consent in dementia research: how Public Involvement can contribute to addressing "old" and "new" challenges.Frontiers in dementia · 2025Article
- A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Dementia resources for eating, activity, and meaningful inclusion (DREAM) toolkit co-development: process, output, and lessons learned.Research involvement and engagement · 2023Article
- Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Precision medicine in neurodegeneration: the IHI-PROMINENT project.Frontiers in neurology · 2023Article
- Keeping track of and recognizing the value of Public Involvement work in dementia research.Frontiers in neurology · 2022Article
- Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.Health expectations : an international journal of public participation in health care and health policy · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDementia outcomes include memory loss, language impairment, reduced quality of life and personality changes. Research suggests that outcomes selected for dementia clinical trials might not be the most important to people affected.
objectiveOne of the goals of the 'Real world Outcomes across the Alzheimer's Disease spectrum for better care: Multi-modal data Access Platform' (ROADMAP) project was to identify important outcomes from the perspective of people with dementia and their caregivers. We review how ROADMAP's Public Involvement shaped the programme, impacted the research process and gave voice to people affected by dementia.
designThe European Working Group of People with Dementia (EWGPWD) were invited to participate. In-person consultations were held with people with dementia and caregivers, with advance information provided on ROADMAP activities. Constructive criticism of survey content, layout and accessibility was sought, as were views and perspectives on terminology and key concepts around disease progression.
resultsThe working group provided significant improvements to survey accessibility and acceptability. They promoted better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings. They effectively expressed difficult concepts through real-world examples.
conclusionsThe role of the EWGPWD in ROADMAP was crucial, and its impact was highly influential. Involvement from the design stage helped shape the ethos of the programme and ultimately its meaningfulness. PUBLIC CONTRIBUTION: People with dementia and their carers were involved through structured consultations and invited to provide feedback on project materials, methods and insight into terminology and relevant concepts.
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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.