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Born in Bradford (BiB) is a longitudinal research project. The aim of BiB is to work out why some people have good health or well-being, while others have difficulties. To do this, BiB collects information from participants about all aspects of their lives at different ages using surveys, research clinics and other assessments. BiB also gathers information about families from other sources, such as health records, or environmental records. BiB processes the data to make sure it is accurate, well organised, and to make it so that no person can be identified from the data. BiB then shares this processed data with scientists conducting research with potential public benefit. These scientists can be based anywhere in the world.
BiB is part of Bradford Teaching Hospitals NHS Foundation Trust, who is the Data Controller for the information directly collected by BiB. BiB is also the joint Data Controller for information about participants collected from routine administrative sources.
BiB’s purpose is to conduct research that aims to improve the public good. Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is:
Where sensitive personal information is involved, our legal basis is:
The GDPR defines ‘sensitive personal information’ as information that reveals a person’s racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership; and the processing of genetic data or biometric data for the purpose of uniquely identifying a person; data concerning health or data concerning sex life or sexual orientation.
This legal basis within GDPR and the Data Protection Act 2018 is separate to, and in addition to, our seeking consent to take part in the research process, which we use to help ensure our research is ethical and complies with other applicable laws.
Taking part in BiB is voluntary and you are free to withdraw at any time without giving a reason. You will not be identified from the research – researchers do not see your name with your information – they just see your barcode or ID number. Every research project is checked to make sure it meets the highest scientific and ethical standards. Born in Bradford and all the researchers we work with are professionally and legally bound to keep your information confidential. There are independent experts whose job it is to look at what we do and how we do it to make sure your rights are protected. All our research aims to benefit society.
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:
Born in Bradford Project Office
Bradford Institute for Health Research
Bradford Teaching Hospitals NHS Foundation Trust
Bradford Royal Infirmary
01274 36 4474
When you phone, email or text us we will verify your identity and ensure that you are a study participant before proceeding. Any information that you give us will be recorded in our contact management system unless you request otherwise. We will also record relevant details such as date or time of the phone call, email or text message.
When you complete questionnaires or consent forms on our website or on tablet devices that we provide at research visits, we will collect standard internet log information to decide if you have completed your questionnaire or not. We may then contact you to remind you to complete your questionnaire if you have not already done so.
When you complete questionnaires or forms on screen, all information you provide is confidential. Your personal details will be kept separately from your research data. No researcher will ever see your name linked to your research data.
Online questionnaires are administered on Bradford Teaching Hospitals NHS Foundation owned computer systems.
When you return a paper questionnaire or paper form to us we will treat this information as confidential. Your personal details will be kept separately from your research data. No researcher will see your name linked to your research data. Paper questionnaire and forms are kept in locked filing cabinets in locked BiB offices for the duration of the study, after which they will be securely shredded.
When we speak to you to arrange a visit in person to a research clinic or other assessment visit, we collect personal information such as your name, address, phone number and email address in order to help us manage the appointment. We also use this information to keep our contact management system information up to date, and may use it in future to contact you about taking part in other BiB studies, unless you ask us not to.
Our appointment booking system is administered on Bradford Teaching Hospitals NHS Foundation Trust owned computer systems.
We sometimes work with schools to contact you to ask whether you would be happy for your child to take part in new research projects based at school and run by BiB. If you and your child agree that your child should take part, then your school may pass personal information to us about your child to help us manage the study visit on the day. This information will include name and date of birth, and is treated as confidential. Only staff involved in managing the study visit will see these details. Your child’s personal details will be kept separately from their research data. No researcher will ever see their name linked to their research data.
When research data is required to be recorded (audio or video) we will make this clear, explain what we intend to do with it and ask for your consent. Due to the difficulty in guaranteeing that a recorded interview will not contain personally identifiable data, we treat all as if they do.
Interviews are recorded on encrypted devices. Interview recordings may be securely transcribed by a BiB member of staff, or by an external transcription company approved by the Bradford Teaching Hospitals NHS Foundation Trust to process data subject to the Data Protection Act.
We keep your personal details confidential, and separate from your research data. Your personal details will not be shared with third parties except for certain service providers working on our behalf, for example, interview transcription services, confidential waste disposal, and companies providing printing services for large mail-outs. We only use third parties that have been approved by Bradford Teaching Hospitals NHS Foundation Trust to process data subject to the Data Protection Act.
Some research projects need information based on locations – such as where you live, where you work, which school you went to etc. BiB uses addresses and postcodes to produce new information, such as levels of air pollution near your home, or availability of parks or green spaces in your neighbourhood, which we then give to researchers. We do this in such a way that it is impossible for a researcher to link your research data, e.g. data from questionnaires, back to your address.
We only collect your data with permission, for example by asking you to attend a clinic or complete a questionnaire. Once we have collected it, it is processed for research use. It is stored securely and confidentially. We de-identify the research data, so you cannot be identified from it. We then provide this information to researchers on request and only under strict conditions. Our website provides further information on how researchers access data.
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, dental services and organisations that hold education records, such as the Local Authority (Council) and the Department for Education.
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.
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.
UKLLC is a UK wide initiative to develop a central secure research IT system which will hold the de-identified study data from many longitudinal studies, including Born in Bradford. UKLLC is described in detail at https://ukllc.ac.uk
Before sending to UKLLC, data from Born in Bradford is de-personalised so that anything that identifies you – such as your name, date of birth and address – is removed. This de-personalised data is sent to the UKLLC database where it is linked with relevant data from your NHS records and added to data from volunteers in the other participating studies. If you have used the Zoe COVID-19 symptom tracker app then this data may be included as well.
In order to link your health records to your BiB research data within UKLLC, personal identifiers such as your name and NHS number are sent to NHS Digital (https://digital.nhs.uk). These personal identifiers are removed from the data before it is used by researchers, so they cannot identify you personally.
Researchers from the UK can apply to access the data within the secure database. Researchers have to show that their research has public benefit. They have to be trained and vetted by the Office for National Statistics to make sure they are appropriately qualified and that they know how to handle data securely.
The University of Bristol are the data controllers for the UKLLC database and are responsible for looking after it securely. Access to your data within the database by researchers is controlled by Born in Bradford.
If you wish to opt out of having your information used for research within the UKLLC database, please contact the Born in Bradford office on 01274 36 4474 or firstname.lastname@example.org and we will make sure your data is not included. This will not affect your participation in any other aspect of Born in Bradford’s work.
Born in Bradford works with Genomics England to sequence genomes to find out what our bodies can tell us about what keeps us healthy and what might make us more likely to develop certain types of diseases. If you provided a blood sample at study registration or at a follow-up clinic, and provided consent for genetic research, then your genome may be sequenced by Genomics England. All of your information is stored at Genomics England using the most advanced and secure systems, and only scientists that can show they will be using the data to improve our health are allowed to have access to it. Your name and any other details that might identify you are removed.
More information about how Genomics England looks after your data is provided on the Genomics England website.
Born in Bradford is the Data Controller for your genomic and other research data when it is held by Genomics England and used for research within their secure data centre.
When you apply for access to BiB data for research we ask for some personal information, including the name and contact details of the Lead Applicant, and those of any co-applicants and any other data users on the proposal and supporting documents. We will use this data so we can communicate with you about your proposal. We may also collect your personal details on a number of supporting documents related to your proposal. These include: data sharing agreements, material transfer agreements, confidentiality agreements or data user responsibilities agreements, and NHS Research Ethics Committee application forms. We may also collect your personal details when you submit a manuscript for review.
We will never sell your personal information to other organisations.
The accuracy of your information is important to us. If you believe any of the information we hold concerning you is out of date, please let us know.
When someone visits our website we collect standard internet log information and details of visitor behaviour patterns. We do this to find out things such as the number of visitors to the various parts of the site to help us monitor and improve our site. We collect this information in a way which does not identify anyone. We do not make any attempt to find out the identities of those visiting our website. We will not associate any data gathered from this site with any personally identifying information from any source. If we do want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We do not generally provide any personal information about users of our website to third parties or other users.
When you sign up for our newsletters via the website, we ask for your name, job title and email address. We use this data so that we can monitor interest in our newsletters, communicate with you and keep you up to date with news and information from us.
Our website uses ‘cookies’ which are text files placed on your computer when you visit a site. These files help us to understand how you use our website. Cookies don’t collect personal data from your computer, only data created by your browsing. Some cookies remain on your computer after you leave the website; these are called ‘persistent’ cookies. Others are deleted automatically when you close your browser and others simply expire. We use the following cookies on our website:
We may collect non-personally-identifiable information relating to your use of our sites via Google Analytic technology. This may include: which pages you see; how long you stay; what you click on our pages; if you visit the site again; which country and city you are browsing from; etc. This data is collected for the purpose of monitoring and understanding the effectiveness of our website. We also collect data relating to the demographics and interests of our users via Google Analytics and cookies set by Google advertising networks. This data is used in aggregated form to help improve the site and Born in Bradford’s communication efforts.
Further information and instructions for opting out of Google Analytics tracking are available at https://tools.google.com/dlpage/gaoptout.
You can choose not to accept cookies by changing your browser settings or deleting existing cookies installed on your computer. Visit www.aboutcookies.org for information on how to do this.
Links on the Born in Bradford website may lead to other websites. We are not responsible for the content of any linked site. Listing and linking should not be taken as an endorsement of any kind and we accept no liability in respect of content. We cannot guarantee that these links will work all of the time and have no control over the availability of linked pages.
Born in Bradford uses publicly available information, such as social media usernames, handles and hashtags, to target posts promoting research to relevant users of social media platforms.
Our website and materials relating to our information, products and services (or to third party information, products and services), are provided ‘as is’, without any representation or endorsement made and without warranty of any kind, whether express or implied, including but not limited to the implied warranties of satisfactory quality, fitness for a particular purpose, non-infringement, compatibility, security and accuracy.
We do not warrant that the functions contained in the material within our website will be uninterrupted or error free, that defects will be corrected or that this site or the server that makes it available are free of viruses or represent the full functionality, accuracy, reliability of the materials.
In no event will we be liable for any loss or damage including, without limitation, indirect or consequential loss or damage, or any loss or damages whatsoever arising from use or loss of use of, data or profits arising out of or in connection with the use of our website.
These terms and conditions shall be governed by and construed in accordance with the laws of England and Wales. Any dispute arising under these terms and conditions shall be subject to the exclusive jurisdiction of the courts of England and Wales.
We make every effort to check and test material at all stages of production. It is always wise for you to run an antivirus programme on all material downloaded from the Internet. We cannot accept any responsibility for any loss, disruption or damage to your data or your computer system which may occur whilst using material derived from our website.
You have the right to request access to, rectification of, and restriction of processing of your data collected via our website. If you wish to exercise these rights please contact the Born in Bradford project office at:
Born in Bradford Project Office
Bradford Institute for Health Research
Bradford Teaching Hospitals NHS Foundation Trust
Bradford Royal Infirmary
01274 36 4474
If you are still unhappy with the outcome of your enquiry, you can contact the Information Commissioner’s Office:
The Information Commissioner