ArticleCMAJ open
Patient and public involvement in pragmatic trials: online survey of corresponding authors of published trials.
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In one paragraph
Article in CMAJ open. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
10.5field-weighted citation impact, top 1% of its field
What it found
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The trial behind it
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.
- Pooled it
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Empirical research related to the ethics of pragmatic clinical trials: A scoping review.Learning health systems · 2026Article
- Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices.Research involvement and engagement · 2025Article
- Patient engagement and shared decision-making in trial recruitment intervention studies: a systematic review.Research involvement and engagement · 2025Review
- Patient and Public Involvement in Paediatric Pragmatic Randomized Controlled Trials: A Mixed Methods Study.Children (Basel, Switzerland) · 2025Article
- Landscape of informed consent practices and challenges in point-of-care clinical trials.Learning health systems · 2025Article
- CONSORT 2025 explanation and elaboration: updated guideline for reporting randomised trials.BMJ (Clinical research ed.) · 2025Article
- Establishment of a patient and public involvement and engagement group to support clinical trials in Pakistan: Initial lessons learned.Research involvement and engagement · 2024Article
- Prioritisation of clinical trial learning needs of musculoskeletal researchers: an inter-disciplinary modified Delphi study by the Australia & New Zealand musculoskeletal clinical trials network.BMC medical education · 2024Article
- "The power imbalance was blown out the window": developing and implementing creative workshops to enhance communication of statistics in patient and public involvement in clinical trials.Research involvement and engagement · 2024Article
- Reporting of equity in observational epidemiology: A methodological review.Journal of global health · 2024Review
- Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: a mixed methods developmental evaluation study.Research involvement and engagement · 2023Article
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 at 4 institutions in 3 countries.
Shelley VanderhoutClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont. shelley.vanderhout@thp.ca.
Pascale NevinsClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Stuart G NichollsClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Colin MacarthurClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Jamie C BrehautClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Beth K PotterClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Kate GilliesClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Beatriz GoulaoClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Maureen SmithClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Alicia HilderleyClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Kelly CarrollClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Anne SpinewineClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Charles WeijerClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Dean A FergussonClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
Monica TaljaardClinical Epidemiology Program (Vanderhout, Nevins, Nicholls, Brehaut, Carroll, Fergusson, Taljaard), Ottawa Hospital Research Institute; School of Epidemiology and Public Health (Vanderhout, Potter, Fergusson, Taljaard), University of Ottawa, Ottawa, Ont.; Child Health Evaluative Sciences (Macarthur), Hospital for Sick Children Research Institute, Toronto, Ont.; Health Services Research Unit (Gillies, Goulao), University of Aberdeen, Aberdeen, UK; Patient Partner (Smith), INFORM RARE Research Network, Ottawa, Ont.; Patient Partner (Hilderley); Louvain Drug Research Institute (Spinewine), Université catholique de Louvain, Woluwe-Saint-Lambert, Belgium; CHU UCL Namur (Spinewine), Godinne, Pharmacy Department, Yvoir, Belgium; Departments of Medicine, Epidemiology & Biostatistics, and Philosophy (Weijer), University of Western Ontario, London, Ont.
University of Aberdeen · GBOttawa Hospital · CAUCLouvain · BECHU Dinant Godinne UCL Namur · BE
Funding
Training Core (I)U54AG063546 · NIA · BROWN UNIVERSITY · PI JOSEPH E. GAUGLER · 2019 to 2026
$125.9MChief Scientist Office HSRU1NIA NIH HHS U54 AG063546
Abstract
backgroundThere are few data on patient and public involvement (PPI) in pragmatic trials. We aimed to describe the prevalence and nature of PPI within pragmatic trials, describe variation in prevalence of PPI by trial characteristics and compare prevalence of PPI reported by trial authors to that reported in trial publications.
methodsWe applied a search filter to identify pragmatic trials published from 2014 to 2019 in MEDLINE. We invited the corresponding authors of pragmatic trials to participate in an online survey about their specific trial.
resultsOf 3163 authors invited, 2585 invitations were delivered, 710 (27.5%) reported on 710 unique trials and completed the survey; 334 (47.0%) conducted PPI. Among those who conducted PPI, for many the aim was to increase the research relevance (86.3%) or quality (76.5%). Most PPI partners were engaged at protocol development stages (79.1%) and contributed to the co-design of interventions (70.9%) or recruitment or retention strategies (60.5%). Patient and public involvement was more common among trials involving children, trials conducted in the United Kingdom, cluster randomized trials, those explicitly labelled as "pragmatic" in the study manuscript, and more recent trials. Less than one-quarter of trials (22.8%) that reported PPI in the survey also reported PPI in the trial manuscript.
interpretationNearly half of trialists in this survey reported conducting PPI and listed several benefits of doing so, but researchers who did not conduct PPI often cited a lack of requirement for it. Patient and public involvement appears to be significantly underreported in trial publications. Consistent and standardized reporting is needed to promote transparency about PPI methods, outcomes, challenges and benefits.
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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.