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Record W4415063374 · doi:10.1177/15562646251384573

Weighing Open Science Against Research Participation Burden in Informed Consent: A Randomized Pilot Study

2025· article· en· W4415063374 on OpenAlexafffund
Renata Iskander, Patrick Bodilly Kane, Madeleine Sharp, Jonathan Kimmelman

Bibliographic record

VenueJournal of Empirical Research on Human Research Ethics · 2025
Typearticle
Languageen
FieldHealth Professions
TopicPatient-Provider Communication in Healthcare
Canadian institutionsMcGill University
FundersRéseau de cancérologie Rossy
KeywordsRandomized controlled trialOpen scienceClinical trialProtocol (science)Open dataResearch ethicsPatient participationOpen label

Abstract

fetched live from OpenAlex

Deciding to participate in clinical research requires patients to evaluate various trial characteristics. This survey study measured the influence of trial characteristics (visit volume and open data sharing) on willingness to participate in patients with Parkinson's disease. Patients were randomized to either evaluate two trials (joint condition) or a single trial (separate condition). For patients who evaluated both trials, willingness to participate was greater in the restricted science protocol with fewer visits (7.60 vs. 7.12; mean difference, -0.48; 95% CI, -0.83 to -0.14). Patients who evaluated both trials were less willing to participate in the study involving more visits than patients who only evaluated the study involving more visits (7.12 vs. 8.14; mean difference, 1.02; 95% CI, 0.30 to 1.74). Patients have difficulty evaluating information about open science and visit burden when information is presented separately. Although views toward open science were favorable, preferences for fewer visits dominated decisions.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Direct model labels (unvalidated)

Per-model category and study-design labels from the labeling rounds. They are machine output, unvalidated, and the disagreement between models ships as data. No study design here is MEDLINE-validated yet.

Model armCategoriesStudy designConfidence
gemmaMetaresearchOpen science
Domain: Methods · Genre: Empirical
About the Canadian research system: no · About a Canadian topic: no
Randomized trialhigh
gptMetaresearchOpen science
Domain: Methods · Genre: Empirical
About the Canadian research system: no · About a Canadian topic: no
Randomized trialhigh
models agreeAgreement compares identical category sets and study designs across arms.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.351
metaresearch head score (Gemma)0.544
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Science and technology studies, Open science, Research integrity
Consensus categoriesMetaresearch, Science and technology studies, Open science
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.193
Threshold uncertainty score0.999

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.3510.544
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0110.012
Science and technology studies0.0120.007
Scholarly communication0.0010.001
Open science0.0090.009
Research integrity0.0000.042
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.950
GPT teacher head0.784
Teacher spread0.166 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Labeled directly by 2 models reading the full record.

Study designRandomized trial
DomainMethods
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations0
Published2025
Admission routes2
Has abstractyes

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