The Born In Wales study is committed to protecting your privacy and complies with the principles of the relevant data protection regulations. This includes the EU General Data Protection Regulations (GDPR) and the UK Data Protection Act. We are committed to ensuring that your data is handled properly and any information we hold is stored securely and used in a lawful and ethical way.
- What data we collect;
- On what grounds we hold your personal data;
- How it would be used;
- How long we hold it, and;
- Where it would be stored.
This Privacy Statement relates to the collection, handling and storage of data we obtain from expectant mother and fathers completing the Born In Wales survey.
This Statement does not relate to the anonymised data utilised in Born In Wales project and that held within the SAIL Databank. For more information on how SAIL accesses, stores and manages de-identified data for research visit https://saildatabank.com/saildata/data-privacy-security/
1.0 Born In Wales and our data contacts
Born In Wales is a research project based within Swansea University. Born In Wales is governed by all Swansea University policies and procedures. Swansea University is the Data Controller and is committed to protecting the rights of individuals. The survey data held by Born In Wales is processed under the legal bases of “public task in the public interest” and ‘archiving purposes, scientific or historical research purposes or statistical purposes in the public interest’ where collection of data is necessary for the University to carry out specific research. Personal and special category data is collected only from participants who have given their consent to participate in the survey. Full information in relation to the survey is provided to participants via a Participant Information Sheet.
2.0 What information does Born In Wales hold and how will it be used
2.1.Contact details of pregnant women and their partners.
The names and email addresses, contact number and postal addresses of pregnant women and their partners are processed to allow us to contact pregnant women and their partners with regards to telling them about results and recruitment for participation in a further follow up questionnaire. This data is processed as legitimate interest. The following personal information will be held depending on their preferred contact method:
- Email Address
- Postal Address
- Telephone Number
2.2. Consent from pregnant women and their partners to participate in the survey.
The data collected in relation to consent to participate in the survey will be held under legitimate interest to ensure the Born In Wales uses data only from those participants who have consented to participate in the study.
The following personal information will be held:
These data are held in order to ensure and evidence base that all participants taking part do so with their consent. Records of consent will be kept for 10 years.
2.3. Self reported data from pregnant women and their partners
Further self-reported data will be held including:
- Participant ethnic origin
- Participant data of birth
- Participant sexual orientation
- Participant health and wellbeing
- Participant employment
The lawful basis under which we will process personal data for research is called ‘task in the public interest’ (Article 6 of the GDPR). In the cases of ‘special category data’ such as sexual orientation and ethnicity, in addition to Article 6, the lawful basis is for ‘archiving purposes, scientific or historical research purposes or statistical purposes in the public interest’ (Article 9 of the GDPR). Self-reported data is collected using MS forms which is subject to GDPR. Your survey data is split into two files. File 1 (which contains identifiable information) and file 2 (which contains survey responses held in a pseudo-anonymised form).
3.0 Who receives your information and how long will it be held for
Your personal data will be used to comply with our information governance requirements for the purpose of evidencing a consent process and contact for future research.
Your identifiable data (file 1) is sent to a trusted third party (NHS Wales Informatic Service), via secure file transfer, as part of the data linkage process. They see only your identifiable information (name, date of birth and address), not the rest of the data from your survey. They use your personal data to create an anonymised number, that is then used to anonymously link your survey answers (file 2) to other sources of data such as your health and education records via the SAIL databank (https://saildatabank.com/saildata/data-privacy-security/). The self-reported health and well-being data you provide (file 2) is also used to give reports to government, midwives and NHS outside of SAIL. These reports only give anonymised and aggregated data (e.g. data at a large group level) and no individual is included in reports.
Your consent information (showing your record of consent to participate in the study) will be held for 10 years to evidence a record of consent. The data held in the SAIL databank is anonymised and so is held indefinitely.
Your contact details given in the Born In Wales survey (name, address, email address, telephone number), will be held for re-contact purposes and to inform of study results for 5 years. If you withdraw consent for re-contact, these contact details will be removed from our database.
4.0 Our security and your data
We are committed to keeping your data secure. Any data you provide to us will be held only on secure servers owned and administered by Swansea University which are subject to suitable physical, electronic, and managerial procedures to safeguard and secure the information we collect. Data will only be accessible by named researchers, who have all undergone safe researcher training.
4.1 Accessing and updating your data
You can change your mind at any time about how we contact you, how we process your data, or ask us to stop contacting you please get in touch with the centre manager: firstname.lastname@example.org
We will be proactive in keeping our records up to date and will aim to action all changes to communication preferences within 7 working days.
5.0 Your data and your rights
The General Data Protection Regulation (GDPR) and new Data Protection Act strengthen and add to individuals’ rights and we are committed to supporting these rights.
You have a right to access your personal information, to rectify, to erase, to restrict and to port your personal information. Please visit the Swansea University Data Protection webpages for further information in relation to your rights.
Swansea University has a Data Protection Officer who can be contacted through email@example.com
Any requests or objections should be made in writing to the University Data Protection Officer:
University Compliance Officer (FOI/DP)
Vice Chancellor’s Office
How to make a complaint
If you are unhappy with the way in which your personal information has been processed you may in the first instance contact the University Data Protection Officer using the contact details above.
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.
If you would like to know more about our data processing, or have any queries regarding the content of this notice then please contact us https://ncphwr.org.uk/contact-ncphwr/ and we will be happy to provide you with any further information that you require.