About this policy
In this Privacy Policy we provide details about how we collect and use personal information about our study participants, researchers who apply to use BaBi-D data and other visitors to our website. We provide details about who is in control of your information at BaBi-D, details of our legal basis for processing personal information, and what you can do to let us know if you change your mind and wish us to stop using your information.
How we use your information
Born and Bred in Doncaster (BaBi-D) is a longitudinal research project. The aim of BaBi-D is to work out why some people have good health or well-being, while others have difficulties. To do this, BaBi-D collects information from participants about all aspects of their lives at different ages using surveys, research clinics and other assessments. BaBi-D also gathers information about families from other sources, such as health records, or environmental records. BaBi-D 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. BaBi-D then shares this processed data with scientists conducting research with potential public benefit. These scientists can be based anywhere in the world.
Our legal basis
BaBi-D is conducted using a partnership approach with Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust as the lead organisation hosting the Principal Investigator, along with RDASH, Doncaster Council and Primary Care, with support from The University of Sheffield and Sheffield Hallam University.
DBTH are the Data Controller for this programme.
BaBi-D’s purpose is to conduct research that aims to improve health inequalities in our community. Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is:
- performance of a task carried out in the public interest (Article 6(1)(e) in the GDPR)
Where sensitive personal information is involved, our legal basis is:
- scientific or historical research purposes or statistical purposes (Article 9(2)(j) in accordance with Article 89(1)).
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.
We may disclose your personal information to third parties if we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or in order to enforce or apply our terms of use and other agreements; or to protect the rights, property, or safety of BaBi-D study participants, BaBi-D staff, or others.
Privacy information for BaBi-D study participants
Our commitment to you
Taking part in BaBi-D 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, including the Babi-D programme, 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.
Changing your mind
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 BaBi-D team, you can contact us at:
Research and Innovation department Doncaster Royal Infirmary Armthorpe Road Doncaster South Yorkshire DN2 5LTEmail: dbth.babi@nhs.net
Telephone: 01302 644070
Phoning, emailing or texting us
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 the date or time of the phone call, email or text message.
Completing questionnaires, consent forms or other forms on screen
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 Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust owned computer systems.
Completing questionnaires, consent forms or other forms on paper
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 questionnaires and forms are kept in locked filing cabinets in locked BaBi-D offices for the duration of the study, after which they will be securely shredded.
Booking clinic appointments or other research visits
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 BaBi-D studies, unless you ask us not to.
Our appointment booking system is administered on Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust owned computer systems.
Working with schools
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 BaBi-D. 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.
Recording and transcribing interviews
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 BaBi-D 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.
How we use your personal details
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 Doncaster and Bassetlaw 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. BaBi-D 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.
How we will use your research data
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. The Born in Bradford website provides further information on how researchers access data.
Collecting data about you 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 the BaBi-D programme. 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:
- How many children have asthma in Doncaster?
- Why are children in some areas more likely to get asthma than children in other areas?
- How are our children doing in schools within Doncaster?
- What factors affect children’s exam results?
- How many mums within the Doncaster area go on to develop postnatal depression?
- What could be done to help prevent depression or provide support for the family?
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 BaBi-D team can link it all together to support our research projects.
Privacy information for researchers
When applying to access BaBi-D data for research
When you apply for access to BaBi-D 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.
Additional privacy information for all individuals
Visitors to our websites
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 upfront 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.
Cookies
Our site uses cookies, which are small text files that are placed on your machine to help the site provide a better user experience.
In general, cookies are used to retain user preferences, store information for things like shopping carts, and provide anonymised tracking data to third party applications like Google Analytics. As a rule, cookies will make your browsing experience better.
However, you may prefer to disable cookies on this site and on others. The most effective way to do this is to disable cookies in your browser.
We suggest consulting the Help section of your browser or taking a look at the About Cookies website which offers guidance for all modern browsers
Further information and instructions for opting out of Google Analytics tracking are available at https://tools.google.com/dlpage/gaoptout
Links to external websites
Links on the DBTH and 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.
Public social media data
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.
Disclaimer
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 expressed 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.
Virus Protection
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.
Your rights
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 BaBi-D project office at:
Research and Innovation department Doncaster Royal Infirmary Armthorpe Road Doncaster South Yorkshire DN2 5LTEmail: dbth.babi@nhs.net
Telephone: 01302 644070
If you are still unhappy with the outcome of your enquiry, you can contact the Information Commissioner’s Office:
The Information Commissioner Wycliffe House Water Lane Wilmslow Cheshire SK9 5AFTelephone: 01625 545700
About this Privacy Policy
This is version 1.0 of this Privacy Policy. It was published on 05/05/2022.
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