Evidence map›Paper›PMID 42080498›Full record

ArticleEthics & human research

Perspectives of Information Access in the Informed Consent Process for Clinical Research Participation in Australia.

Fleur O'Hare, Lauren N Ayton, David Foran, Camille Paynter, Michelle Gallaher, Kelly Schulz, Myra B McGuinness, Lauren Barina, Steven Y C Tong, Tessa Saunders

Abstract read
In one paragraph

Article in Ethics & human research. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Fleur O'HareLead researcher and consumer involvement & advocacy lead in the Department of Optometry and Vision Sciences at the Melbourne School of Health Sciences at the University of Melbourne.
Lauren N AytonResearch fellow in the Department of Optometry and Vision Sciences at the Melbourne School of Health Sciences at the University of Melbourne.
David ForanAccess and inclusion specialist, is a consumer research partner at Equalus Advisory.
Camille PaynterClinical researcher in the Department of Audiology and Speech Pathology at the Melbourne School of Health Sciences at the University of Melbourne.
Michelle GallaherResearch partner at Cerulea Clinical Trials.
Kelly SchulzConsumer research partner at Knowable Me.
Myra B McGuinnessBiostatistician at the Centre for Eye Research Australia.
Lauren BarinaGlobal clinical trial manager in the Department of Infectious Diseases at the Peter Doherty Institute for Infection and Immunity at the University of Melbourne.
Steven Y C TongProfessorial fellow and clinical researcher at the Victorian Infectious Diseases Service at the Royal Melbourne Hospital at the Peter Doherty Institute for Infection and Immunity.
Tessa SaundersResearch fellow in the Evaluation and Implementation Science Unit at the Melbourne School of Population and Global Health at the University of Melbourne.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Access to communication and information during the informed consent process for clinical research is essential for empowered decision-making. To build awareness of accessibility practices, this study aimed to explore current enablers and barriers experienced by potential research participants during informed consent procedures. A multimodal survey, capturing quantitative and qualitative data, was distributed through industry networks in Australia. The survey was open to people who had been involved in an informed consent process for a clinical research study. We collected survey data from August 2024 to January 2025. Quantitative data were reported descriptively, while qualitative data were analyzed using content analysis, with barriers and facilitators mapped to the Theoretical Domains Framework. Half of the respondents (52%) disclosed having an information access challenge impacted by vision, intersectional disability, or neurodiversity. Five themes around information access were identified: communication, information quality, assistive technology, trusted supports, and information intervals. Our research highlights some suggested actions that can support researchers and research organizations in providing accessible communication and information formats, thereby enhancing equity and inclusion in informed consent practices.

Indexed as

Access to InformationBiomedical ResearchInformed ConsentResearch SubjectsAdultAustraliaCommunicationFemaleHumansMaleMiddle AgedSurveys and Questionnairesaccessclinical research participantequitygood clinical practicehuman research ethicsinclusioninformed consentresearch participation

Identifiers

PMID42080498
PMCPMC13137929

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.