ArticleBMJ open2019
'I haven't met them, I don't have any trust in them. It just feels like a big unknown': a qualitative study exploring the determinants of consent to use Human Fertilisation and Embryology Authority registry data in research.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 2 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
10 citing papers in PubMed, 2 syntheses or guidelines pooled it, 18 citations in OpenAlex.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled 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
- Thematic analysis of a United Kingdom-wide survey to explore women's perceptions and concerns about assisted reproductive technology.Human fertility (Cambridge, England) · 2026Article
- Men's perceptions of long-term health outcomes following fertility problems: a UK-based mixed-methods survey.Journal of assisted reproduction and genetics · 2026Article
- Assessing ambient air pollution's effects on birth outcomes: a Scottish IVF cohort study (2010 -2018).Environmental health : a global access science source · 2025Article
- Article
- I don't mind my information going to the Moon, but I don't want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland.Archives of public health = Archives belges de sante publique · 2025Article
- Perinatal health in a cohort of children conceived after assisted reproduction in the UK: a population-based record-linkage study.BMJ open · 2024Article
- Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol.HRB open research · 2023Article
- 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
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 at 1 institution in 2 countries.
Funding
Abstract
objectivesTo explore why and how fertility patients decide to allow (or deny) the use of personal data held in the Human Fertilisation and Embryology Authority registry for linkage and research.
designA qualitative study was conducted using in-depth face-to-face interviews and an online survey to garner information on experience and opinions from fertility clinic patients and staff. Verbatim transcripts were analysed using the 'one sheet of paper' method to identify themes.
settingWomen and men were recruited between September 2015 and December 2017, via fertility clinics across England and online advertising, then interviewed at a location convenient to them.
participants20 patients and 9 staff were interviewed, 40 patients completed the online survey.
resultsConsent for disclosure (CD) forms are completed at a stressful time, when patients often feel overwhelmed; these forms were considered a low priority. Perceptions of benefit (to individuals, to wider society) and harm (misuse of data, impact of disclosure on child) influenced consent. Important themes included: understanding of the forms; trust in those asking, in researchers, in the Human Fertilisation and Embryology Authority (HFEA); and wider attitudes to data use. Issues influencing response, and thus the representativeness of the HFEA data set, were highlighted.
conclusionsUnderstanding what is being asked, and trust in those organisations keeping and using personal data, affects individual decisions to consent to disclosure. Patients were influenced by the wider context of infertility, as well as general concerns about data sharing and security. Low consent rates, which vary by clinic and likely also by patients' characteristics, have adverse implications for research conducted using HFEA data collected after 2008. Public understanding of data use and security is relatively poor; increased public trust in, and awareness of, research based on routine data could improve consent to data use and reduce the risk of bias.
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.