CODES Trial: Data Processing Notice
This notice helps clarify how “we” the COgnitive behavioural therapy for Dissociative (non-Epilpetic) Seizures trial (CODES trial), and King’s College London (KCL), process the data we hold about “you”, a participant who consented to participate in CODES randomised controlled trial. The CODES trial is funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme to examine the treatment and cost of Dissociative Seizures through treatment with Cognitive Behavioural Therapy (CBT). This notice applies only to individuals who signed a consent form for participating in the randomised controlled trial.
Your data is processed under article 6(e) of GDPR legislation, data “processing is necessary for the performance of a task carried out in the public interest”. This is consistent with KCL’s purpose carrying out research into this condition and its university charter. This processing does not include any automated decision-making or profiling tasks.
You provided personal data to us during your original consent and were provided with information about withdrawing your data at that time and the length of time we would retain information about you. You may withdraw your data at any time. To do so please contact the Chief Investigator. We retain information for 7 years after the completion of the study. We informed you that we would request further information about your health service usage from the NHS. This data will be held for at least 2 years. We will share specific identifiers with NHS Digital (England), eDRIS (Scotland), and NHS Wales Informatics Service to obtain more data about you. The data we are requesting relates to your health service usage the 6 months before your time in the trial and 6 months before your time in the trial ended. We will compare these two periods to see if people across the trial had any substantial change in health service usage while being treated. This will be reported in summarised terms about all participants in the trial and it will not be possible to identify you as an individual. This was described to you when you consented in the Patient Information Sheet you were given, and the consent form you signed. The data we hold about you are processed in relation to the research tasks of the trial. The NHS data is not provided to any other third party.
King’s College London is the Data Controller for the study. If you have any concerns about your data, please contact both the Data Protection Office or the Chief Investigator of the study. You have the right to withdraw your consent at any time.
The Data Protection Officer at King’s College London is Albert Chan. He can be reached at:
The study is led by Professor Laura Goldstein, the Chief Investigator of the CODES trial. She may be reached at:
firstname.lastname@example.org 0207 848 0218
Professor Laura Goldstein, IoPPN, 16 De Crespigny Park, London SE5 8AF
You have the right to lodge a complaint with the Information Commissioner’s Office (ICO) if any concerns raised by you have not be appropriately addressed by the Data Protection Officer and Chief investigator. You can start that process by visiting the ICO’s website: https://ico.org.uk/make-a-complaint/ or calling them on their helpline 0303 123 1113.