How we process your data

How we process your data

 Following VIDAL trial closure, consenting participants will continue to have their written and electronic medical records monitored passively to assess lifelong health. All data files (the original study data during the trial period along with GP records, hospital admissions, cancer and death registrations) are linked using a unique participant study number all of which is stored in the trial database. Identifying information (e.g. names, contact details, NHS number and date of birth) are then stored in separate encrypted files. Our processing activities have been approved by an ethics committee with further permission from NHS Digital to use hospital admission, cancer and death registration data.

The statistical analyses of the data produces tabular or graphical results where no member of the studies could be identified. If you think you participated in the VIDAL Trial and have any questions or wish to withdraw consent for your data being used for this purpose, please e-mail VIDAL@LSHTM.AC.UK *protected email* or contact the study team at the London School of Hygiene & Tropical Medicine on telephone number 020 7927 2722.

 

Will my taking part in the study be kept confidential?

All information collected about you during the course of the research will be kept strictly confidential. This includes the personal information you give us at the beginning of the study as well as all information from your medical records.  All electronic records will be stored in a password-protected database stored on a secure computer belonging to Queen Mary, University of London. Paper records of your data (eg consent form, contact details and any postal correspondence or paper questionnaires collected during the study) will be stored in locked filing cabinets at your GP practice and a copy sent to the study coordination centre at the London School of Hygiene and Tropical Medicine. The only people who will have access to identifiable data will be members of the study team and representatives of NHS Digital for the purpose of following up your health status and hospital admissions. All will have a duty of confidentiality to you as a research participant and all data processing will be done in accordance with the Data Protection Act 1998. Following your agreement to take part, and with your permission, we will follow up your health status and hospital admissions by supplying your NHS number, date of birth and unique study ID to NHS Digital for this purpose. Your data will be used to analyse results of the study.  It will be retained for up to 20 years and will be disposed of securely.  If we wanted to use it for future studies we would need to gain permission for this from a Research Ethics Committee. You will have the right to check the accuracy of data held about you and correct any errors. Our procedures for handling, processing, storage and destruction of your data are compliant with the Data Protection Act 1998.

 

Long term follow up

With your consent we would also like to monitor all your written and electronic medical records to assess your health for the rest of your life. This information will be obtained by linking your NHS number, date of birth and postcode to various medical records, including those held by NHS Digital on cancer registrations (provided by NHS Digital on behalf of Public Health England), deaths (sourced from civil registration data and provided by NHS Digital on behalf of the Office for National Statistics) and the Hospital Episodes Statistics database on hospital admissions.

 

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