This notice helps clarify how “we” the COgnitive behavioural therapy for Dissociative (non-Epileptic) 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. This notice sets out how we handle your data and your rights under the General Data Protection Regulation; this updates our earlier statement "CODES Trial: How we handle personal data".
Your data is processed under:
General Data Protection Regulation Article 6 (1) (e): “Necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”
General Data Protection Regulation Article 9 (2) (j): i.e. where the processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.
The above is consistent with the organisation's purpose carrying out research into this condition and its university charter.This processing does not include any automated decision-making or profiling tasks.
We informed you that we would request further information about your health service usage from the NHS. This data will be held for up to 3 years. (Any other study data will be retained for 7 years after the completion of the study).
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 (and South London and Maudsley NHS Foundation Trust for English data only)* 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.
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:
[email protected] or 0207 848 0218
Professor Laura Goldstein, Institute of Psychiatry, Psychology and Neuroscience, 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.
*South London and Maudsley NHS Foundation Trust (SLaM) is a joint data controller for data obtained from NHS Digital only. The Data Protection Officer at South London and Maudsley NHS Foundation Trust is Dr Murat Soncul who can be reached at:
CODES Trial: Data Processing Notice