COgnitive Behavioural Therapy for Dissociative (Non-Epileptic) Seizures

A Randomised Controlled Trial

CODES blue jpeg

At the beginning of the study you were given an information sheet which explained that the CODES research team will obtain centrally held records of hospital attendances for six months before you were allocated to a treatment study, and the last six months of the study. This page will provide you with more information about how your data will be obtained and what it will be used for.

 

What hospital attendance data are you collecting?

We will be collecting data about how many times you have used hospital services (A&E and outpatient and inpatients appointments), 6 months before the treatment study started and for the last 6 months of  the study.

 

What will my hospital attendance data be used for?

As stated in the information sheet, we will use your hospital data to compare patterns of hospital use in people having the different treatments in this study.

 

How will my hospital attendance data be obtained?

Patients in England:

The centralised system that we will obtain data from is the Health and Social Care Information Centre (HSCIC). This centre collects information about your admissions, outpatient appointments and A&E attendances at NHS hospitals in England, also known as Hospital Episode Statistics (HES). The research team at King’s College London will collect your hospital data from HSCIC using information to identify you, including your study PIN and NHS number. This information will be securely transferred to the HSCIC, who will then securely return your hospital data to us. We will collect this data for the 6 months before the treatment study, and to cover the last 6 months of the study.

Patients in Scotland:

The centralised system that we will obtain data from is the Information Services Division (ISD), who stores information about your admissions, outpatient appointments and A&E attendances at NHS hospitals in Scotland. The research team at King’s College London will collect your hospital data from the electronic Data and Research Innovation Service (eDRIS) (a part of the ISD that provides data to researchers). To collect your data we will use information to identify you, including your name, date of birth and NHS number. This information will be securely transferred to the eDRIS, who will then securely return your hospital data to us in an anonymised format. We will collect this data for the rom 6 months before the treatment study, and to cover the last 6 months of the study.  

Patients in Wales:

The centralised system that we will obtain data from is the NHS Wales Informatics Service, who stores information about your admissions, outpatient appointments and A&E attendances at NHS hospitals in Wales. The research team at King’s College London will collect your hospital data from NHS Wales Informatics Service using information to identify you, including your study PIN and NHS number. This information will be securely transferred to NHS Wales Informatics Service, who will then securely return your hospital data to us in an anonymised format We will collect this data for the rom 6 months before the treatment study, and to cover the last 6 months of the  study.

For all participants:

The data from any participants who have withdrawn from participation of the study will not be sent to these third parties for any data linkages. We will link data to third parties in the event of a participant passing away.

 

For further information, including on how we handle your personal identifiable data in this study, please contact:

 

Dr Izabela Pilecka – Trial Manager

 

T: 020 7848 0665    or E: izabela.pilecka@kcl.ac.uk

 

Professor Laura Goldstein – Chief Investigator  

 

E: laura.goldstein@kcl.ac.uk

 

CODES Trial: How we handle personal data