How we use your information

This privacy notice tells you what to expect when BOX (The Bart’s-Oxford Family Study) collects information from its study participants. BOX is a research project run and owned by the University of Bristol and the University is the data controller as defined in the Data Protection Act (the person who determines why and how personal data are processed).

It applies to information we collect from participants:

• Phoning, emailing or texting us
• Visiting our website
• Updating contact details via our website
• Returning completed questionnaires, consent forms, reply slips or other written information
• Posting information on social media
• Collecting data from NHS Trust patient records (with your consent)

It also applies to the way we handle, process and store your information in:

• Sending mail and email
• Storing questionnaires and consent forms
• Finding participants who we have lost contact with
• Providing your research data for use in scientific research

Our commitment to you

Taking part in the project 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 ID number.

Changing your mind

If you wish to change the way you participate or stop participating in BOX, you can do so at any time. Please contact us via any of the ways on our website:

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 Microsoft Access system unless you request otherwise.

The University’s third-party email provider is Microsoft Outlook. Please be aware that you have a responsibility to ensure that any email you send to us is within the bounds of the law.

Visitors to our website

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 personal 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.

This notice is separate to, but supported by, the University of Bristol’s website privacy policy.

Updating your contact details via our website

When you update your contact details via the online form on our website and hit ‘submit’, an email will be sent to the BOX participation team who will then update your contact details on our Microsoft Access database system. No information will be stored online. The online form is administered on University of Bristol owned computer systems. The University’s third-party email provider is Microsoft Outlook.

Returning completed questionnaires, consent forms, reply slips or other written information

When you return an item to us in writing (for example a questionnaire, consent form, reply slip or written letter) we will treat this information as confidential. Your personal details will be kept separately from your research data. We will not pass your personal details to third parties without your consent except under the circumstances described below.

How we will use your personal details

We will keep your personal details confidential and separate from your research data.

Third party software tools

Third party services collect certain technical information from your device including standard internet log information i.e. Internet Protocol (IP) address, browser type and version, and page interaction information.

We use a third-party provider, MailChimp, to deliver our newsletter. See MailChimp privacy policy.

You have a right to withdraw your consent to be on our mailing list at any time by completing the Unsubscribe from mailing list form, clicking 'Unsubscribe' on the bottom of MailChimp emails or emailing box-study@bristol.ac.uk

We use Royal Mail for posting questionnaires, invitations to take part and other correspondence.

How we will use your research data

We will 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 will be processed for research use. It will be stored securely and confidentially. We will de-identify the research data, so you cannot be identified. We will then provide this information to researchers on request and only under strict conditions.

Posting information on social media

BOX maintains a social media account on Facebook and Twitter.

Users of these social media presences should be aware that any information posted is covered by the terms and conditions of the respective site and is in the public domain. However, BOX will not use this data for research purposes without asking for your permission. We will not attempt to use social media to collect your personal details.

Social media will only be used as a communication tool between us and you. We may store your Facebook URL, Facebook email address or Twitter username so that we may continue to communicate with you. This piece of administrative data will be stored securely in our contact management database, along with your other contact details that you have provided to us in the past.

Please be aware that you have a responsibility to ensure that information you post on our social media sites are within the bounds of the law.

Complaints or queries

BOX aims to meet the highest standards when collecting and using personal information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving the way we handle your personal details.

This privacy notice is intended to be brief and clear, and does not cover every single way we handle your personal details in minute detail. However, we are happy to provide further information on request.

How to contact us

If you want to request information about our privacy policy, you can contact us via the details on our website. Further information is also available in the University of Bristol’s Information Security Policy.