What information is
collected?
Details of your spinal diagnosis, operation and
complications will be recorded on the BSR by your hospital. Personal details included, but not limited to, your name, address and telephone number are gathered, but when the BSR extracts data
from the registry for analysis, your identifiable details will be removed (anonymised or pseudonymised).
Changes to the way we use
your data
Your data
may be linked with other healthcare datasets for the purposes of research or audit. Your datat may be used in anonymised or pseudonymised form. Pseudonymised data can be linked back to an individual
bu tneeds a second dataset which is held securely and away from the data being analysed. If you have any concerns regarding this please email customer.support@amplitude-clinical.com.
What is Consent?
Your consent will allow the British Spine Registry (BSR) to examine details of your
diagnosis, surgical procedure, any complications, your outcome after surgery and your questionnaires. These are known as 'service evaluations' or 'audits'. The information collected in this registry
may also be shared with NHS commissioning organisations (NHS England and Clinical Commissioner Groups) to ensure they can meet their statutory duties. When this is required, NHS Digital collect your
identifiable information using their powers under the Health and Social Care Act 2012 as directed by NHS England. The data collected will then go through a process of pseudonymisation
(de-identification) before being provided to commissioning organisations under a strict governance framework. You will be consented separately for any other research studies where specific data may
be collected using the Registry.
What do I have to
do?
If you choose to consent, you'll be asked for your
email address or that of a parent or guardian. At intervals before and after your spinal procedure, you'll be emailed some simple questionnaires to complete. These questionnaires are
important for your surgeon to understand what affect your treatment may have had on your activity levels, your symptoms and your quality of life.
Do I have to give my
consent?
No. If you do not consent, your personal
details will not be stored on the BSR. Your clinician may still record clinical information, but in an anonymised form. If you do not consent to the BSR holding your personal details,
please contact us.
Is my information
safe?
Your personal details are kept confidential at all
times. Very strict rules and secure procedures are in place to ensure that your information is kept safe.
You can ask for a copy of your personal data held on
the BSR by writing to your Consultant.
Login to your patient portal now to complete your
scores.