'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.
Claire CarsonLisa HintonJenny KurinczukMaria QuigleyPublished in: BMJ open (2019)
Understanding 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.
Keyphrases
- electronic health record
- big data
- end stage renal disease
- chronic kidney disease
- endothelial cells
- primary care
- prognostic factors
- type diabetes
- emergency department
- mental health
- peritoneal dialysis
- adipose tissue
- public health
- machine learning
- skeletal muscle
- patient reported outcomes
- insulin resistance
- tyrosine kinase
- induced pluripotent stem cells
- pluripotent stem cells