Together, we can improve patient care through knowledge

What is a registry?

A registry collects large volumes of valid clinical and patient outcome data for all who undergo particular operations. The information collected is analysed to increase clinical understanding of an operation’s success.

The British Spine Registry (BSR) is a web-based database, for the collection of information about spine surgery in the UK. 

It helps your Consultant Spine Surgeon and other medical practitioners understand more about spinal procedures and how to better improve patient care for you and future patients. 

The data is also used to influence decision making, to improve patient safety and ensure your surgeons and hospitals have feedback about their performance, so they can continuously improve.

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.

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