How is my information used?
Collecting information about fertility treatments allows us to monitor trends in the sector to make improvements and publish useful information for patients, donors, clinics, researchers and the wider public.
Find out more about why we collect data
Sometimes, we’re asked to share the information we hold. Information that cannot reveal your identity (anonymous information) can be shared without your consent. Information that can reveal your identity (identifiable information) can only be shared with your consent, with someone who has the correct approval to see it (unless you had treatment with your own eggs, sperm and embryos between August 1991 and 1 October 2009 – see more below).
Anyone can access anonymous information (information that has your personal identifiers taken out) about the different fertility treatments that are being carried out and the outcome of those treatments.
This information is extremely helpful to medical professionals, researchers, journalists, students and many others who are trying to understand more about issues surrounding fertility. It can also be used to inform quality monitoring, staff training or in commissioning new healthcare services.
However, anonymised information only gives a very limited picture, so it is less useful to researchers looking into generating new scientific or medical knowledge. Identifiable information
Identifying information is a very valuable resource for researchers and can be used to carry out medical and social research. Without it, some important research simply couldn’t happen, such as when researchers want to link datasets together to understand the effects of a particulat treatment over time.
If you give your consent, your personally identifiable information will only be given to the research team, or those who link the datasets as part of the research, and is subject to strict security and confidentiality controls. Your identifying information is not published outside of the research team.Identifying information could, for example, be used to investigate the safety and efficacy of fertility treatments, develop new treatment and storage techniques and study the effect of national policies, such as the HFEA multiple births policy. It can also be used to link fertility treatment data with other healthcare records for example, to see whether IVF affects the health of women or their children.
Find out about research that’s been completed using the information we hold.