Survey on data for research

Another short survey – apparently this one has just five questions – and it is looking at how you feel about your personal data being used in fertility research.

The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.

Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an example here), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future).  Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.

The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en

Have you had IVF in the last 5 years?

If you’ve had fertility treatment in the last five years, a team of researchers from Oxford University are keen to interview you for their work looking at how and why people decide whether to allow their personal data to be used for fertility research.

If you might be interested, or want to know more about the project, you can contact Dr Claire Carson at claire.carson@npeu.ox.ac.uk or you call call her on 01865 28975. You will need to have had fertility treatment in a clinic in the UK in the last five years and you also need to live in England.