Data privacy
Why does FIND-AF need my data?
The FIND-AF study has been designed to see if using the FIND-AF computerised tool in GP records, and offering people at higher risk of AF the use of an ECG recorder, will increase the number of people detected early with atrial fibrillation.
To determine if we diagnose more people with AF through the use of FIND-AF we will count how many people are diagnosed with atrial fibrillation at 1 year after entering the study compared to the year before FIND-AF started. We will then analyse if there was any difference in the number of events between before the study and after the study.
To enable us to do this we need to collect data during the course of the study which will come from your GP. This will be routinely collected data (i.e. information that is normally collected as standard practice) and will include individual, patient-level data about age, sex, medical diagnoses and medication.
How is information collected about me in FIND-AF?
If you decide to take part information will be requested from your GP. You can contact the study team at any time to withdraw permission for the study to obtain this information from your GP or NHS Digital. You do not have to tell us the reason for decision if you do not wish to do so.
Will my information be kept secure?
The study is sponsored by the University of Leeds. The University of Leeds is the data controller for the information collected about participants. This means that the University of Leeds is responsible for looking after your information and using it properly. Information about you is entered onto a computer, processed and stored securely using encryption and password protection and access is limited to only those members of staff who need to use the information. No information that directly identifies you (such as your name, address and date of birth) will be passed to external parties.
Who has access to my personal data?
Personal data that directly identifies you (such as your name, address and date of birth) can be accessed by the study team.
Information collected about you during the study may also be looked at, in confidence, by authorised individuals from the University of Leeds and regulatory authorities, to check that the study is being carried out correctly.
How long is my personal data held by the FIND-AF team?
The University of Oxford is required to keep the data collected about you for up to 10 years after the end of the study. The end of the study is when the last health information is collected about study participants.
European data protection regulations apply in this study and these laws require us to tell you about the rights you have over the personal data collected about you in the study.
The University of Leeds is using your personal data for research purposes; it 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 for processing your personal data.
Your rights to access, change or move your data are limited as the University of Leeds needs to manage your information in specific ways in order for the research to be reliable and accurate. You have the right to access any personal data that is held about you by the FIND-AF team and the right to ask us to correct any inaccurate personal data we hold about you. You have the right to restrict or object to processing of your personal data. However, if you decide that you do not want any more information collected about you by the AMALFI team, the University of Leeds may be obliged by law to keep information already collected to ensure consistency and reproducibility of the study results. Rights to receive an electronic copy of the personal data held about you are also limited.
If you would like to discuss this further please contact the study team.