How BASICS uses personal data

Thank you for your participation in the BASICS Trial.

 You might recall that before taking part in the BASICS clinical trial you were asked to read the information sheet and gave your consent for your data on NHS hospital admissions to be collected from electronic routine NHS health care records. The aim of this notice is to give you further information on how the data collection process works.

One of the purposes of BASICS is to assess the value for money of antibiotic and silver impregnated shunts compared to standard shunts. To do that we will need to collect information about your hospital admissions and other uses of the NHS. This can be done by accessing information about you which is stored on NHS computer systems. The purpose of this notice is to explain this in more detail, and to ensure that you are fully aware of how your data will be collected, securely transferred and analysed.

Information about your attendance to hospitals is recorded on NHS computers. This forms your electronic medical record. These records are stored securely and shared between a number of NHS organisations to inform your care and the wider functions of the NHS. In BASICS, we will use data from your electronic medical records alongside information from the questionnaires you fill in.

For Patients in England

We will access information from your electronic medical records about your hospital care (these are called Hospital Episode Statistics) and other uses of the NHS from NHS Digital (https://digital.nhs.uk/ ). NHS Digital is the organisation which collects this information on behalf of the NHS. We will ask NHS Digital for Hospital Episode Statistics on your outpatient, inpatient and A&E attendances for the period covering the financial years spanning the BASICS study.

 

To retrieve information from your electronic medical records, information to identify you, namely your name, date of birth, NHS Number, gender and postcode will be securely transferred from the BASICS study team at the University of Liverpool to NHS Digital. Information about your hospital care will be securely transferred from NHS Digital to the University of Liverpool and to the BASICS health economists at Bangor University.

For Patients in Wales

NHS Wales Informatics Service already holds the required data regarding your hospital admissions. In order for this data to be used, it is a requirement that a copy of your consent form is securely and confidentially transferred to NHS Wales Informatics Services for confirmation of consent.

The “Consent for the Transfer of Consent Form to NHS Wales Informatics Services” form provides you the opportunity to give your permission for us to send your consent form to NHS Wales Informatics Service. This will be reviewed by the Information Governance Department at NHS Wales.

To retrieve information from your electronic medical records, information to identify you, namely your name, date of birth, NHS Number, gender and postcode will be securely transferred from the BASICS study team at the University of Liverpool to NHS Wales Informatics Service. Information about your hospital care will be securely transferred from NHS Wales Informatics Service to the University of Liverpool and to the BASICS health economists at Bangor University.

For All Patients

We will extract information only once. We will obtain information only from the 26th March 2013 to the 30th April 2018, which is the timeframe that covers the duration of the study. Your electronic medical records will be stored on secure University of Liverpool and Bangor University computer servers which meet NHS data security standards.

The BASICS study team at the University of Liverpool will receive the electronic medical records and then link all the information collected about you for the BASICS study. The BASICS study team at the University of Liverpool will remove your identifying details before sharing the information with the members of the study team at Bangor University who will be conducting the analysis.

Data protection and security is of paramount importance and all information collected about you during this study will be used in accordance with the Data Protection Act 1998 and the General Data Protection Regulation (GDPR) which will come into effect from 25/05/18. Personally identifiable information collected for this study will be deleted at the end of the trial archiving period, which is for a maximum of 15 years from the official End of Trial.  All of the organisations involved in this study have established systems in place for securely retrieving and transferring information from electronic medical records for research. 

We would like to remind you that your participation in the BASICS clinical trial is voluntary and you can withdraw from the trial at any time by revoking your informed consent, without giving a reason and without incurring any adverse effect on the level of care you will receive.

If you have any questions please contact the BASICS study team using the contact details provided below.

Tom Kearns (BASICS Trial Co-ordinator)

Telephone: 0151 795 8759

Email: basics@liverpool.ac.uk

 

 

 
 




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