Who has access to my personal data?
Any personal data that identifies you are collected and managed by the UKPDS team and will not be shared with anyone else, except to obtain health information about you from NHS Digital (see section above).
How long is my personal data held by the UKPDS team?
The University of Oxford is required to keep the information collected about you for at least 25 years after "end of the study" and perhaps longer if required by the law or other research needs. The "end of the study" is when the last health information is collected about study participants.
Anonymous results of the study may be made available to collaborators and relevant bone fide researchers according to the Diabetes Trials Unit and the Nuffield Department of Population Health (NDPH), University of Oxford data sharing policy: https://www.ndph.ox.ac.uk/about/data-access-policy
Who is responsible for my data?
The University of Oxford, as sponsor, is the data controller. This means that we, as University of Oxford researchers, are responsible for looking after your information and using it properly. The University of Oxford is using your personal data for research purposes and will only process personal data as necessary to undertake research that is being carried out in the public interest. This is known under data protection law as our “legal basis”. The legal basis for the processing and storage of your personal data for the UKPDS Long Term Follow-up study and its sub-studies is that it is ‘a task in the public interest’ (Article 6 (1) (e) EU General Data Protection Regulation (GDPR)). In addition, a required condition under GDPR to process your special category (sensitive) personal data is met as it is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes (Article 9 (2) (j) GDPR).
What are my data rights?
Data protection regulation provides you with control over your personal data and how it is used. When you agree to your information being used in research, however, some of those rights may be limited in order for the research to be reliable and accurate.
Further information about your rights with respect to your personal data under the General Data Protection Regulation is available on the University of Oxford's Compliance webpage https://compliance.admin.ox.ac.uk/node/673106. If you would like to contact us directly for more information about how we process and protect data collected for research, please email: firstname.lastname@example.org or call: 01865 857 240 or you can write to: UKPDS, Diabetes Trial Unit, University of Oxford, OCDEM Building, Churchill Hospital, Old Road, Headington, OX3 7LJ
If you wish to raise a complaint on how we have handled your personal data, you can either contact the UKPDS study team via the contact details above or the University of Oxford's Data Protection Officer via email at: email@example.com or by telephone on +44 (0) 1865 270285, who will investigate the matter. If you are not satisfied with our response or believe we are processing your data in a way that is not lawful you can complain to the Information Commissioner's Office (ICO) or call their helpline on 0303 123 1113.
What if I want to withdraw from the study?
It helps UKPDS to produce reliable results if we are able to follow-up as many participants as possible by accessing their electronic NHS records. If you decide you do not want your study data to be linked in this way you can withdraw from this follow-up without affecting your current medical care. This can be done by contacting the study team who would require your identifiers to then inform NHS Digital and other data sources that you no longer wish to be included. You are free to do this at any time and don’t have to give us a reason. If you have any questions, please contact the study team using the details below:
Diabetes Trials Unit
Telephone: 01865 857240
The UKPDS Long-term Follow up study and its substudies have been reviewed and approved by the South East Scotland Research Ethics Service (18/SS/0127).
Reference number: 18/SS/0127
PRIVACY NOTICE UKPDS STUDY 25th November 2019 V6