How we manage your information

What information do you hold about me?

In the course of treatment, storage or donation, licensed clinics are required by law to collect information about patients, their partners and donors. Some of this information is forwarded to us and held securely on our database.

This information includes:

• your name
• your date of birth
• your place of birth 
• your NHS number
• the number of embryos transferred in treatment 
• whether your treatment led to a pregnancy
• whether you had a multiple pregnancy.

We also hold information about any children born from your treatment, including their:

• name(s)
• date of birth
• place of birth
• country of birth
• NHS number
• birth weight

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).

 

Anonymous information

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

 

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.

If I consent to my identifying information being shared, who can access it?

Identifying information is only available to researchers linked to a recognised UK research institution. Projects also need to have received approval from a research ethics committee.

We only allow researchers to use identifying information in cases where their research couldn’t be conducted without it. We assess their research needs and disclose the smallest amount of information we can to meet those needs for the shortest time possible. We have agreements with them which state that they can’t show the information to anyone outside of the research team that need to see it. This would also be a condition of any ethical approval that they have to use identifying information.

Will my personal information be published in a research project’s findings?

No. Where researchers publish their research findings, they will anonymise the information.

I had treatment between August 1991 and 1 October 2009, what do I need to know?

Since 1 October 2009, under new legislation, researchers have been able to apply to access identifying information for patients involved in treatment between August 1991 and September 2009 (and any children born as a result of treatment) without getting their consent. This does not apply to donors or those receiving donated eggs, sperm or embryos.

View the legislation

If you’ve had treatment during this time and you’d prefer that your information was not shared, please contact us.

Your identifying information will only be used in research projects which have been approved by both the HFEA and the Research Ethics Committee.

How do I consent to my identifying information being used in research?

If you’d like researchers to be able to use your identifying information, please contact your clinic and they’ll help you to complete the necessary forms Your clinic will provide you with the.‘Your consent to disclosing identifying information’ form, also known as the CD form. This is where you can record your consent in terms of sharing your identifying information.

Browse the consent forms clinics use

There are two kinds of research you can consent to: non-contact and contact research.

Non-contact research

If you consent to non-contact research, you’re agreeing that the identifing information that we hold about you can be used for research purposes but you’ll never be contacted by your clinic to invite you or any child you might have via this treatment to take part in any further research studies.

Most of the research that’s conducted using identifying information is non contact.

To consent to this, you’ll need to tick the ‘yes’ box at section 4.1 of the CD form.

Contact research

If you give consent to contact research, you’re giving permission for:

• the identifying information that we hold about you to be used for research purposes, and
• staff at your clinic to contact you in the future if they think you or any child you might have via this treatment may be suitable to take part in a research study.

There are many different types of research study that you could be eligible for – a clinical trial of a new treatment, a research study about the treatment you’ve had, or research about patients’ or donors’ experiences or opinions.

By consenting to contact research on this form, you are only giving consent for the clinic to contact you with an invitation to take part. If you’re invited to take part, you’re under no obligation to accept; it is your decision whether you (or any children from your treatment) take part in any research study you are invited to be involved in.

To consent to contact research, you’ll need to tick the ‘yes’ box at section 4.2 of the CD form.

What if I don’t want to consent to my identifying information being used in research?

It’s fine if you don’t want your identifying information being used in research. Whatever you decide, it won’t affect your treatment in any way.

To record these wishes, tick ‘no’ to consenting to both non-contact and contact research at sections 4.1 and 4.2 of the CD form.

If you don’t consent to either contact or non contact research, your anonymised information can still be used in research. This is because anonymised information can be shared without consent because it doesn’t contain your identifying information; the researcher won’t be able to tell who you are from the information.

What if I change my mind?

You can change your consent at any time – just ask your clinic to help you complete the necessary form. Nobody will mind, you don’t have to give any reason why and it won’t affect your treatment.

However, it’s not possible to withdraw your identifying information from research when your information has already been included within the analysis. Who can I talk to if I have questions about how my data’s used?

If you have any questions or concerns about how your personal information is managed, just contact us and we’ll be happy to help.

Who can I talk to if I have questions about how my data’s used?

If you have any questions or concerns about how your personal information is managed, just contact us and we’ll be happy to help.