ArticleBMJ (Clinical research ed.)2006
National survey of British public's views on use of identifiable medical data by the National Cancer Registry.
Article in BMJ (Clinical research ed.), 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 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
51 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- "Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.Wellcome open research · 2018Pooled it
- Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches.Journal of cancer survivorship : research and practice · 2017Pooled it
- Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol.BMC medical informatics and decision making · 2012Trial
- Trial
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- Placing conditions on sharing general practice data for research: Recommendations from two community juries.International journal of population data science · 2025Article
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.Journal of participatory medicine · 2020Article
- Public awareness of forensic odontology and willingness to enroll in a prospective dental registry: A survey conducted in Saudi Arabia.The Saudi dental journal · 2020Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
- Real-world data and the patient perspective: the PROmise of social media?BMC medicine · 2019Article
- Public attitudes in England towards the sharing of personal data following a mass casualty incident: a cross-sectional study.BMJ open · 2018Article
- Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study.BMC medical ethics · 2018Article
- Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.BMC medical ethics · 2017Article
- A critique of the regulation of data science in healthcare research in the European Union.BMC medical ethics · 2017Article
- The risk of re-identification versus the need to identify individuals in rare disease research.European journal of human genetics : EJHG · 2016Article
- Real-world data in the United Kingdom: opportunities and challenges.BMC medicine · 2016Article
- The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications.BMC medical ethics · 2015Review
- Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study.BMC medical informatics and decision making · 2015Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo describe the views of the British public on the use of personal medical data by the National Cancer Registry without individual consent, and to assess the relative importance attached by the public to personal privacy in relation to public health uses of identifiable health data.
designCross sectional, face to face interview survey.
settingEngland, Wales, and Scotland.
participants2872 respondents, 97% of those who took part in the Office for National Statistics' omnibus survey, a national multistage probability sample, in March and April 2005 (response rates 62% and 69%, respectively).
results72% (95% confidence interval 70% to 74%) of all respondents did not consider any of the following to be an invasion of their privacy by the National Cancer Registry: inclusion of postcode, inclusion of name and address, and the receipt of a letter inviting them to a research study on the basis of inclusion in the registry. Only 2% (2% to 3%) of the sample considered all of these to amount to an invasion of privacy. Logistic regression analysis showed that the proportions not concerned about invasion of privacy varied significantly by country, ethnicity, socioeconomic status, and housing tenure, although in all subgroups examined most respondents had no concerns. 81% (79% to 83%) of all respondents said that they would support a law making cancer registration statutory.
conclusionsMost of the British public considers the confidential use of personal, identifiable patient information by the National Cancer Registry for the purposes of public health research and surveillance not to be an invasion of privacy.
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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.