The RESPIRE Privacy Statement
The NIHR Global Health Research Unit on Respiratory Health (RESPIRE) Privacy Statement
Updated 22 March 2023
Who we are
The NIHR Global Health Research Unit on Respiratory Health (RESPIRE) is led by The University of Edinburgh and the Universiti Malaya funded by the National Institute for Health and Care Research (NIHR). The Unit consists of the University of Edinburgh with 22 partner organisations, which are: Bangladesh - ARK Foundation (ARK), Bangladesh Primary Care Respiratory Society (BPCRS), Child Health Research Foundation (CHRF), Fasiuddin Khan Research Foundation (FKRF), International Centre for Diarrhoeal Disease Research (icddr,b); Bhutan - Jigme Dorji Wangchuk National Referral Hospital, Thimphu (JWN); India - Christian Medical College Vellore (CMC), KEM Hospital Research Centre (KEM HRC), King George's Medical University (KGMU), MAHAN Trust, Mahatma Gandhi Tribal Hospital (MAHAN); Indonesia - Universitas Padjadjaran (UnPad); Malaysia - Universiti Malaya (UM), Universiti Putra Malaysia (UPM); Pakistan - The Aga Khan University (AKU), The Allergy & Asthma Institute (AAIP), Neoventive Solutions (NS), Riphah Institute of Healthcare Improvement & Safety, Riphah International University (RIU), The Initiative (TI); Sri Lanka - University of Peradeniya (UP), University of Sri Jayewardenepura (USJ); UK - University of York (UoY), International Primary Care Respiratory Group (IPCRG). The Unit also has 9 affiliate organisations which are Projahnmo Research Foundation (PRF), Bangladesh; Pulmocare Research and Education Foundation (PURE), India; Universitas Gadjah Mada (UGM), Indonesia; Luyang Health Clinic (Klinik Kesihatan Luyang) (LHC), Malaysia; Department of Paediatrics, Sibu Hospital (SH), Malaysia; Anuradhapura Teaching Hospital (ATH), Sri Lanka; The National Hospital Kandy (NHK), Sri Lanka; Cambridge Environmental Research Consultants (CERC), UK; and International Severe Acute Respiratory and emerging Infection Consortium (ISARIC), UK. Roles and responsibilities for delivering the Unit’s work and organising training and events can be allocated across these organisations.
For data collected under this Privacy Statement, the University of Edinburgh is the Data Controller (as that term is defined in the EU General Data Protection Regulation (EU) 2016/679), registered with the Information Commissioner’s Office, Registration Number Z6426984.
You can contact the University of Edinburgh Data Protection Officer at email@example.com.
What information is collected by RESPIRE and how do we use it?
Details of members and former members of RESPIRE for the website (https://www.ed.ac.uk/usher/respire) to explain our work to others, and for reporting to our funders.
Details of PhD students and Early Career Researchers, including work email addresses and research projects, for the delivery of the Post Graduate Training Programme.
- Personal details (including: name, email address, work organisation, passport details, dietary and mobility/access requirements) for those who attend / speak at / facilitate any of our meetings, including the Annual Scientific Meeting, seminars, webinars, training events and educational workshops. If you are an attendee, speaker or facilitator, we will use your information to provide you with the details you need to attend the event, make travel arrangements, and allow strategic planning of future events. If you are a speaker/facilitator, we will also use your information to promote the event and inform others about the content.
- Video recordings and photography from our events, which may be online or in person. Video recordings of content presented at events may be published on the RESPIRE website and shared on social media. Photographs from events may be used in promotional material or presentations about RESPIRE and shared on social media. We will always notify participants if an event is being recorded and/or if photographs will be taken. If it is an online event, we will clarify the use of the recording and allow people to leave the event or turn off their camera if they do not wish to be filmed or photographed. If the event is in person, we will ask you to inform one of the organisers at the event if you do not wish to be filmed or photographed.
- Posting images and/or video on the RESPIRE website or social media channels constitutes international transfer of data. This will only be done with explicit consent of the individual(s) concerned.
- Personal details (including: name, email address, work organisation) for Unit members and for non-members when they sign up to receive our Unit Newsletter. We will use this information to send you our Newsletter and notify you of future events or other relevant news and opportunities from our networks (e.g. publication of videos, information on research projects, funding calls, training/development opportunities, conferences). These are core functions of RESPIRE.
- Any information you post, email or otherwise send to us. We will use this information to reply to you and to keep records of what we say.
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.
Personal information collected for our Community Engagement and Involvement activities has a separate privacy statement.
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 RESPIRE. We may also process your information under the legal basis of contract, where this processing is necessary for a contract you have with us.
How we store and share your personal information
University staff working for RESPIRE in administration, Unit management 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 3rd Parties, when their services are required to deliver our events or other work (e.g. catering at an external venue, printing for event materials, travel bookings or reimbursements, photography, funding).
- Other departments and services within the University of Edinburgh or the Universiti Malaya (e.g. IT, catering, reprographics);
- Other participating partners/ organisations/ institutions in RESPIRE, where they are delivering work for the Unit (e.g. events, providing training);
- The University of Edinburgh’s approved travel provider (currently Diversity Travel) for the purposes of making travel and accommodation arrangements;
- The University of Edinburgh’s international banking payments provider (currently Santander) for non-staff international payments;
- Co-hosts of events and conferences;
- Videography and photography companies;
- Research funding bodies (e.g. for reporting or audit of financial records);
- Eventbrite, Zoom and Microsoft Forms for event registrations; and
- Dotmailer for newsletters and mailings.
Personal data will not be shared with external service providers other than those acting on the instructions of the University of Edinburgh or the Universiti Malaya. 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.
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 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 the Unit newsletter and member mailing lists, we will review all list members at least once a year. If anyone leaves the Unit, we will remove them from our list. You can opt out of our mailing lists at any time.
We will retain personal information about Unit members as long as it is required to manage the grant and comply with funder reporting requirements.
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.
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 RESPIRE@ed.ac.uk if you wish to make a request.
How to complain
If you have any concerns about our use of your personal information, you may in the first instance contact the University of Edinburgh Data Protection Officer at firstname.lastname@example.org.
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
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk