Privacy & Cookies Policy
3. View BREATHE Patient and Public Involvement Privacy Statement
BREATHE Privacy Statement
Updated 27 April 2022
1. Introduction
BREATHE - The Health Data Research Hub for Respiratory Health is committed to respecting your privacy and protecting your personal data. This privacy statement aims to provide you with information on why and how we collect and use your personal data. It also provides information about your rights.
2. Who we are
BREATHE is a UK-wide collaboration, driving the use of health data in research to transform respiratory health. The Hub is led by The University of Edinburgh, Imperial College London, the University of Leicester, Nottingham University Hospitals NHS Trust, Queen Mary University London, and Swansea University. Roles and responsibilities for delivering BREATHE’s work can be allocated across these organisations.
We also collaborate with our wider partners, who bring a range of expertise, skills and perspectives from patients and publics, UK Universities, third sector and industry. View the full list of BREATHE partners.
For data collected under this Privacy Statement, the University of Edinburgh is the Data Controller.
You can contact the University’s Data Protection Officer at dpo@ed.ac.uk.
Our data protection policy is on the University of Edinburgh website at https://www.ed.ac.uk/data-protection/data-protection-policy
3. What information is collected
Personal data, or personal information, means any information about an individual from which that person can be identified.
Information we collect may include:
- Identity data including your first name and last name, and organisation
- Contact data such as your email address and telephone number
- Technical data including IP address, type of browser or operating system
Personal information collected for our Patient and Public Involvement activities has a separate privacy statement.
4. How we collect this information
We use different methods to collect personal data including:
- When you contact us with an enquiry through the website
- When you register and participate in BREATHE events or training, which may be online or in person
- When you sign up to receive BREATHE newsletters
- When you consent to receive BREATHE marketing materials
- When you visit our website, unless you have opted out of cookie consent
- Other information you post, email or otherwise send to us
For more information on our use of cookies please view our Cookies Policy, found below this Privacy Statement.
5. How we use your information
We process personal data in order to deliver and improve the services we provide and to meet our statutory, contractual and legitimate business requirements in the most efficient and effective way.
We may use your information to:
- Respond to enquiries
- Register you as a client and/or interested party and to manage our relationship with you
- Administer your attendance at BREATHE events or training, and provide information on relevant future events or training
- Notify you of relevant developments and opportunities at BREATHE (e.g. new collaborations, updates on research activity)
- Deliver our newsletters, where consent has been provided
- Deliver marketing emails, where consent has been provided
- In order to administer, support, improve and develop the BREATHE website
- Video recordings and photographs from events may be used in promotional material or presentations about BREATHE and posted on social media. We will always notify participants if an event is being recorded and/or if photographs will be taken. If you do not wish to be filmed or photographed we will ask you to inform one of the organisers at the event.
We do not use profiling or automated decision-making processes. A human decision maker will always be involved before any decision is reached in relation to you.
6. Legal basis for using your information
Whenever we use personal data we must have a legal basis for doing so. The legal basis for using your information will normally be legitimate interest, for the day-to-day running of the BREATHE. We also use consent for processing your personal data for the purpose of adding your details to any newsletter mailing list.
We may also process your information under the legal basis of contract, where this processing is necessary for a contract you have with us.
7. Storage and sharing of this information
University of Edinburgh staff working for BREATHE in administration, Hub operations and communications will have access to your personal information. Information about you will be stored securely with controlled access.
Information that you share with us may be processed by the following third parties, when their services are required to deliver our work:
- HubSpot, a Customer Relationship Management system, to manage our relationship with clients and customers
- Dotdigital or Hubspot for newsletters and mailings
- Eventbrite, Teams or Zoom for event registrations
- Co-hosts of events and conferences
- Videography and photography companies
- Other departments and services within the University of Edinburgh (e.g. IT, catering, printing services)
- Other participating partners of BREATHE, where they are delivering work for the Hub (e.g. consultancy services)
- Research funding bodies (e.g. for reporting or audit of financial records)
Personal data will not be shared with external service providers other than those acting on the instructions of the University of Edinburgh. Where this is the case, a written contract will be put in place with the provider to set out the purposes for which the information can be used and the security measures that must be in place. This contract will ensure that the service provider agrees never to use your data for any additional purposes not set out in the agreement.
Otherwise, unless required to do so by law, we will not share, sell or distribute any of the information you provide to us without your consent.
8. How long will your information be held?
Whenever we collect or process your personal data, we’ll only keep it for as long as is necessary for the purpose for which it was collected and, in some cases, so we can comply with our legitimate and contractual obligations. At the end of that retention period, your data will either be deleted completely or anonymised, for example by aggregation with other data so that it can be used in a non-identifiable way for statistical analysis and business planning.
In the case of subscribed services, such as any newsletter mailing list, we will review all list members at least once a year. You can opt out of our mailing lists at any time.
We will retain personal information about BREATHE members as long as it is required to manage the grant and comply with funder reporting requirements.
9. Your data protection rights
Under data protection law, you have rights including:
- Your right of access - You have the right to ask us for copies of your personal information.
- Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
- Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.
- Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.
- Your right to object to processing - You have the right to object to the processing of your personal information in certain circumstances.
- Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
More details are available from the Information Commissioner’s Office.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.
Please contact us at breathe.admin@ed.ac.uk if you wish to make a request.
10. How to complain
If you have any concerns about our use of your personal information, you may in the first instance contact the University Data Protection Officer at dpo@ed.ac.uk.
If you remain dissatisfied, then you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
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| Name | Provider | Purpose | Expiry | Type |
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| CONSENT | youtube.com | Used to detect if the visitor has accepted the marketing category in the cookie banner. This cookie is necessary for GDPR-compliance of the website. | 2 years | HTTP Cookie |
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| Name | Provider | Purpose | Expiry | Type |
|---|---|---|---|---|
| VISITOR_INFO1_LIVE | youtube.com | Tries to estimate the users' bandwidth on pages with integrated YouTube videos. | 179 days | HTTP Cookie |
| YSC | youtube.com | Registers a unique ID to keep statistics of what videos from YouTube the user has seen. | Session | HTTP Cookie |
| yt.innertube::nextId | youtube.com | Registers a unique ID to keep statistics of what videos from YouTube the user has seen. | Persistent | HTML Local Storage |
| yt.innertube::requests | youtube.com | Registers a unique ID to keep statistics of what videos from YouTube the user has seen. | Persistent | HTML Local Storage |
| yt-remote-cast-available | youtube.com | Stores the user's video player preferences using embedded YouTube video | Session | HTML Local Storage |
| yt-remote-cast-installed | youtube.com | Stores the user's video player preferences using embedded YouTube video | Session | HTML Local Storage |
| yt-remote-connected-devices | youtube.com | Stores the user's video player preferences using embedded YouTube video | Persistent | HTML Local Storage |
| yt-remote-device-id | youtube.com | Stores the user's video player preferences using embedded YouTube video | Persistent | HTML Local Storage |
| yt-remote-fast-check-period | youtube.com | Stores the user's video player preferences using embedded YouTube video | Session | HTML Local Storage |
| yt-remote-session-app | youtube.com | Stores the user's video player preferences using embedded YouTube video | Session | HTML Local Storage |
| yt-remote-session-name | youtube.com | Stores the user's video player preferences using embedded YouTube video | Session | HTML Local Storage |
BREATHE Patient and Public Involvement Privacy Statement
Updated 05 May 2021
1. Information about you: how we use it and with whom we share it
In line with the membership option you have chosen, the information you provide will be used by BREATHE - The Health Data Research Hub for Respiratory Health at the University of Edinburgh to:
- send you information/news about BREATHE and related opportunities
- inform you of opportunities to complete surveys/polls relating to BREATHE and respiratory health research or
- invite you to be involved in the wider work of the Hub.
We are using information about you because you have given us your consent at the point of registration however you are free to withdraw your consent at any time by notifying the BREATHE PPI Coordinator at BREATHEgetinvolved@ed.ac.uk.
We hold the personal data you have provided us in a password protected file on a secure server at the University of Edinburgh until you withdraw your consent for us to process your personal data or the BREATHE PPI group ceases to operate, at which time your personal information will be destroyed. Only authorised staff on the BREATHE Patient and Public Involvement Team will have access to this database.
Your contact details are not shared with anyone outside the PPI team and are not passed to any researchers unless we have specific permission from you and you have indicated you would like a researcher to contact you directly in relation to a project.
We do not use profiling or automated decision-making processes.
If you have any questions, please contact the BREATHE Patient and Public Involvement Team on BREATHEgetinvolved@ed.ac.uk
2. This privacy statement is continued