ArticleJournal of medical ethics2005
"Hello, hello--it's English I speak!": a qualitative exploration of patients' understanding of the science of clinical trials.
Article in Journal of medical ethics, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 3 of them syntheses that pooled 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.
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
38 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Pooled it
- Interventions and assessment tools addressing key concepts people need to know to appraise claims about treatment effects: a systematic mapping review.Systematic reviews · 2016Pooled it
- Audio-visual presentation of information for informed consent for participation in clinical trials.The Cochrane database of systematic reviews · 2014Pooled it
- Trial
- Trial
- Randomized study of placebo and framing information in direct-to-consumer print advertisements for prescription drugs.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2014Trial
- Trial
- Presenting quantitative information about placebo rates to patients.JAMA internal medicine · 2013Trial
- Informing potential participants about research: observational study with an embedded randomized controlled trial.PloS one · 2013Trial
- Improving understanding of clinical trial procedures among low literacy populations: an intervention within a microbicide trial in Malawi.BMC medical ethics · 2012Trial
- Improving informed consent: pilot of a decision aid for women invited to participate in a breast cancer prevention trial (IBIS-II DCIS).Health expectations : an international journal of public participation in health care and health policy · 2008Trial
- Influences on older people's decision making regarding choice of topical or oral NSAIDs for knee pain: qualitative study.BMJ (Clinical research ed.) · 2008Trial
- Do patients and the public understand and feel engaged and valued after reading outcome set study invitations? A UK qualitative study.BMJ open · 2026Article
- Improving Informed Consent for English and Spanish Speakers in Clinical Trials.Therapeutic innovation & regulatory science · 2026Article
- Effects on Maternal Mental Health and Parental Functioning of an Interdisciplinary Intervention to Support Women in Vulnerable Positions Through Pregnancy and Early Motherhood: A Randomized Controlled Trial.Healthcare (Basel, Switzerland) · 2025Article
- Health information and resources in hospital outpatient waiting areas may not meet the needs of older adults from culturally and linguistically diverse backgrounds: A cross-cultural qualitative study.Health information and libraries journal · 2025Article
- Public Understanding and Expectations of Digital Health Evidence Generation: Focus Group Study.JMIR formative research · 2025Article
- Article
- Comprehension of informed consent and voluntary participation in registration cohorts for phase IIb HIV vaccine trial in Dar Es Salaam, Tanzania: a qualitative descriptive study.BMC medical ethics · 2024Article
- "There is nothing better than participating in this study": Living the PAPAartis cardiovascular randomised controlled trial.Contemporary clinical trials communications · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Informed consent may be seriously compromised if patients fail to understand the experimental nature of the trial in which they are participating. Using focus groups, the authors explored how prospective trial participants interpret and understand the science of clinical trials by using patient information sheets relative to their medical condition. An opportunity was provided to hear in the patients' own words how they interpret the information and why there is variable understanding. Respondents struggled to comprehend the meaning and purpose of concepts such as randomisation and double blinding, and found them threatening to their ideas of medical care. Suggestions are made about how to improve the national guidelines on written information for trial participants and pretesting of the information sheets is advocated.
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.