ArticleResearch involvement and engagement2026
Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer's disease and related dementia cohort study.
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors.
Funding
Abstract
backgroundPublic involvement (PI) in research is increasingly requested, yet systematic evaluation is limited. This study evaluates whether a panel advising an Alzheimer’s Disease and Related Dementia’s (ADRD) Cohort Study fulfills PI quality criteria and leads to perceived Cohort Study improvement and describe lessons learned.
methodsA panel of 49 members of the public advised the Cohort Study through questionnaires and meetings. Panelists and Cohort Study researchers completed questionnaires based on PI quality criteria as formulated in the Patient Engagement Quality Guidance Framework, specifically developed to capture insights on the quality of PI. Findings were supplemented by reflections of the panel organizers and three panelists. Additionally, we outlined the panel’s aim and design to provide a practical example of PI in ADRD research.
resultsOf 49 panelists, 43 consented for use of their data for evaluation purposes (72% female (31/43), mean age 62 years, 82% (35/43) in good health). Response rates to the evaluation questionnaire were 37% for panelists (16/43) and 67% for researchers (4/6). Most panelists reported that the panel’s purpose (95%; 15/16) and communication were (very) clear (94%; 15/16), certainly adequate resources to provide input (75%; 12/16), and sufficient transparency (87%; 14/16). All felt respected and found it easy to participate in online panel questionnaires. However, 56% (9/16) found attending in-person meetings challenging due to time or travel. Researchers reported positive impact on Cohort Study quality, e.g., improved participant information letter, yet also highlighted the required time and effort to involve a panel and suggested to improve management of panelists’ expectations. Among the lessons learned are the value of offering multiple ways to participate, and the need for more communication between all parties involved.
conclusionsEngaging a PI panel was perceived to improve an ADRD Cohort Study and fulfilled most quality criteria from the Patient Engagement Quality Guidance Framework. However, results must be interpreted with caution due to potential consent bias.
Indexed as
Identifiers
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.