UK Longitudinal Linkage Collaboration (UK LLC)
Several studies, including EXCEED, have been invited to deposit de-identified COVID-19 data (with your personal information removed) in a national secure research database, known as the UK Longitudinal Linkage Collaboration (UK LLC).
The UK LLC database will bring de-identified COVID-19 data from 1-2 million research volunteers into one place and enable approved researchers to study the health and social impacts of COVID-19. This project will allow researchers to investigate how COVID-19 has impacted different groups in different ways and understand the impact of the pandemic now and in years to come.
As an EXCEED participant, you have played a vital role in tackling COVID-19 by completing our COVID-19 questionnaire or taking part in our antibody testing sub-studies. As well as using your questionnaire responses, EXCEED are collecting routine health data from official records - known as data linkage - to help study COVID-19. EXCEED has helped with the design of this system and it is being run by staff working for UK studies like ours with the lead institution being the University of Bristol.
The data deposited in the secure system will not include your personal details and all use of your data will still be controlled by EXCEED’s data access committee. De-identified data never leaves the system and can only be accessed by approved UK-based researchers who are doing COVD-19 research. The system will be audited by IT and NHS experts to make sure it is safe. Your data will only be used for public benefit research and will not be sold or used for profit.
The University of Leicester (the University) is the Data Controller for your information. Further information about the University can be found here: le.ac.uk.
The University’s Data Protection Officer is : Elisabeth Taoudi, Data Protection Officer and Commercial Lawyer, University Of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7640. Email: email@example.com.
This privacy notice supplements the Information provided in this participant information sheet in relation to your rights under the Data Protection Legislation. Providing you with this information helps the University to discharge its obligation to you under this legislation.
The data we are collecting from you is detailed in the participant information sheet.
We will use your information to enable us to answer the main EXCEED COVID-19 related research questions we have set out in the participant information sheet and to deposit the information we have collected in this study with UK LLC to form the National Research resource.
We and an our partners will do this in a way that protect your identity as indicated above and have technical and organisational measures in place to protect participant data we collect from use.
What is our legal basis for processing your data?
Our legal basis for processing your data is that we are carrying out a task in the public interest as described in article 6.1(e) of the UK GDPR. This task is research which the University performs in the public interest and it is one of our core functions as a University.
Our additional legal basis for processing special category information including information relating to health is that processing is necessary for ‘scientific research or statistical purposes’ in accordance with Article 89(1) as set out in the Data Protection Act 2018 and GDPR Article 9.2(j)
Who will your data be shared with?
- Digital Health and Care Wales (DHCW) who will carry out data linkage using your name, address, and date of birth to link to your healthcare information including information relating to COVID-19.
- Swansea University UKSeRP who will receive de-identified data on behalf of and forming the UK Longitudinal Linkage Collaboration (UK LLC) database led by the University of Bristol.
University of Leicester/EXCEED retains control of the EXCEED dataset.
What are your rights and how to enforce them?
Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them and these rights only apply to identifiable data so they do not apply to de-identified data which is deposited in UKSeRP.
In this research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.
We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health research purposes.
How will this affect the rights of participants?
Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their identifiable personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.
If you withdraw from the study at any stage, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.
What right do you have to complain to the Information Commissioner’s Office?
If you wish to ask questions about our use of this data or your rights, you may contact Information Assurance Services by email at firstname.lastname@example.org or the University’s Data Protection Officer by email at email@example.com.
Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).
The ICO may be contacted:
- By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.
- By telephone: 0303 123 1113.
- By Email: contact can be made by accessing www.ico.org.uk