How we use your Information

If you are a participant in one of our Born in Bradford (BiB) research projects we will have asked for your consent to collect a range of personal information about you and your child.  We may have collected biological samples from you or your child such as blood, saliva or hair, or taken measurements such as body fat, height and weight. We also may have asked for your consent to access information about you from other services like your GP or your child’s school records. We link this information together, and combine it with information from other Born in Bradford participants, to help us answer important research questions about what keeps families healthy and happy.

You can find information sheets about our different BiB research projects.

What are the key messages on this page?

Is my information safe with BiB?

The Born in Bradford project is embedded within the NHS, at Bradford Teaching Hospitals NHS Foundation Trust. Our information systems are managed to the strictest NHS security standards. Only approved members of staff can access the information using secure passwords, and only after completing the necessary training in how to handle sensitive information.

Can I be identified from the information that BiB uses?

Yes, but only under very strictly controlled circumstances. Each member of your family who is signed up to BiB is given a BiB study number. Information that could identify you or your family, like your name and address, is removed from the study information and biological samples, and stored separately in a secure area. When researchers use your information and samples to carry out new studies, they receive the BiB study number but receive no information that could identify you. The BiB team only access the information that identifies you when they need to carry out certain important tasks, like contacting you about the possibility of taking part in a new study or clinic, or requesting your information from your GP. Only authorised members of the BiB team can access information that could identify you, and they are only allowed to do so when carrying out the important tasks that require it. We always make sure that neither you nor anyone in your family can be identified in our results, or in any reports that we publish.

Who uses my information and what for?

Your information and biological samples are stored securely for use by researchers in the UK and abroad. A researcher who wants to access the information must first send a detailed plan to the BiB Executive Group, explaining how they intend to use the information and why their research is important. The researcher must come from a recognised research institution, such as a University, and if the BiB Executive Group approves their study, they must first sign a contract to say they will only use the information to do the approved study. This contract makes sure that the information is used responsibly and safely, and also prevents the researcher from sharing the information with anyone else. The researcher does not receive any information that might identify you directly, such as your name and address. If the researcher were to try to identify you from the information provided, the consequences for them could be severe, resulting in them losing their job or facing prosecution.

What information about me does BiB access from other organisations?

Many organisations regularly collect information about families. The NHS keeps health records so they can provide health services to us. Education organisations keep information to help them to provide services for children in schools. If you have given us consent, we will ask these organisations to provide relevant information about you and your child to Born in Bradford. We use information about you and your child’s health, education and wellbeing. This includes information from organisations like your GP, hospitals you have visited as a patient, community health services such as health visitors, and organisations that hold education records, such as the Local Authority (Council) and the Department for Education.

Why does BiB use information about me from other organisations?

We can learn about people’s lives, health and wellbeing using questionnaires, but it can be easier to get some of this from organisations that collect this information routinely. This can help us to explore questions like:

We also use NHS information systems to help us to keep in touch with you by keeping your contact details up to date.

How does BiB get information about me from other organisations?

In order to access the information you have allowed us to, we provide some necessary personal details, such as your name and address, to the organisations holding the information. This is sent via secure transfer systems. Before the organisations send any information back to us, your name and other details are removed. None of the additional information you have provided to us, such as in questionnaires or our research clinics, is sent to these organisations, so only the BiB team can link it all together to support our research projects.

What if I don’t want BiB to continue to use my information?

If you don’t want us to continue using information about you or your child, please let us know. To do this, or to talk to a member of the BiB team, you can contact us at:

01274 36 4474

borninbradford@bthft.nhs.uk

Born in Bradford Project Office

Bradford Institute for Health Research

Bradford Teaching Hospitals NHS Foundation Trust

Duckworth Lane

Bradford

BD9 6RJ

We reserve the right to make changes to this policy.
Last modification was made 24th May 2018.