National Major Trauma Registry (NMTR) for NHS Wales: Transparency Notice

Traumatic injury is a global burden and contributes largely to death and disability across the UK.  For every trauma death at least two people are left with severe and permanent disability and the effects of traumatic injury have considerable long-term implications upon the quality of life of its survivors.  As a result of traumatic injury, there is also a significant impact upon the associated costs to the NHS.

NHS England has been requested by Digital Health and Care Wales (DHCW)to collect and analyse National Major Trauma Registry (NMTR) for NHS Wales data from Local Health Boards in Wales for the purposes of improving clinical safety, patient outcomes and reducing variation in clinical practice.  The Local Health Boards are responsible for the provision of direct care health services in Wales, including hospital-based care and the operation of the major trauma centre or trauma units/local emergency hospital/rural trauma facilities.

The NMTR for NHS Wales data collection will be managed by NHS England’s Outcomes and Registries programme which was established in 2022 to consolidate and standardise outcome registries in response to the Independent Medicines and Medical Devices Safety Review: First Do No Harm (Cumberlege Review) and Paterson Inquiry (Independent Reviews). Recommendations from these reviews were accepted by the government in their update report on government implementation, which named the Outcomes and Registries programme as the means to deliver ‘a central patient-identifiable database’ to enable a unified model of finance, governance, technical development, data linkage and access.

This notice should be read alongside the main Outcomes and Registries Transparency Notice

The NMTR for NHS Wales data collection contains data about patients who meet a set inclusion criteria:

Trauma patients any age, who meet one of the following:  

1. 3 days plus length of stay or trauma admissions to an ICU or HDU area regardless of length of stay; 
2. Died or 
3. Transferred to another healthcare provider or setting
4. And have sustained an NMTR eligible traumatic injury 

Your personal data, including data related to your health regarding your injury from the incident to your discharge is collected. This includes:

• your NHS number
• your family name
• your first name
• your current postcode
• your date of birth
• the surgeon, and other clinicians involved in your care
• information about your injury, and your health pre and post treatment

NHS England will also collect regular monthly extracts of Patient Episode Database for Wales (PEDW) data from Digital Health and Care Wales (DHCW) in order to identify NMTR eligibility and to link to NMTR data to create a longitudinal database to measure patient outcomes over time.

Data is submitted securely to NHS England via the Outcome Registries Platform by the following trauma receiving Local Health Boards in Wales:

South Wales Trauma Network:

• Hywel Dda University Health Board
• Swansea Bay University Health Board
• Cwm Taf Morgannwg University Health Board
• Cardiff and Vale University Health Board
• Aneurin Bevan University Health Board

North West Midlands and North Wales Trauma Network:

• Betsi Cadwaladr University Health Board

Note that there are no hospitals that treat major trauma cases in the Powys Teaching Health Board area. The hospital that treats the patient will submit this data to the registry.

DHCW will send the PEDW extracts to NHS England via a secure file share portal.

These organisations are requested to provide us with the information as set out in the Data Provision Notice issued to them under section 259(1)(b) of the Health and Social Care Act 2012.

Patient identifiable data collected from Local Health Boards will be stored within the Outcome Registries Platform and will only be accessed where it is necessary to provide direct patient care or to support public functions relating to patient safety and the improvement of patient outcomes. These include:

• access to submitted data for clinical data validation, practice review and appraisal
• patient-event linkage across settings and healthcare providers for continuity of care
• recall or alert flagging and feedback to healthcare providers
• clinical direct care feedback
• patient feedback and GP continuity of care

Quality checking

The data we collect is checked and quality assured by skilled analysts. If necessary, they will check with the organisation who sent us the data to make sure it is correct and complete.

Analysis and linkage

We analyse and link the data we collect to other patient data NHS England already holds and to PEDW data, so that we can measure:

• changes in patient outcomes over time (longitudinal outcome analysis) to drive improvements in trauma services
• overall patient care and improve patient safety and patient outcomes.

The data will also be linked to the NMTR data for England in order to identity Welsh trauma patients treated in England and to support longitudinal outcome analysis.

Publishing statistics

We will use the data to publish national statistics and data outputs that contain only anonymous data which cannot be used to identify individuals. This enables the NHS and other organisations to use this anonymous data for statistical analysis and for planning, commissioning and research purposes. We never publish any data that could identify you.

Data from this collection will be shared with:

The organisation that provided your care: will have access to information which can identify you via the Outcome Registries Platform for the purposes of:

Correcting any data quality errors on the data submitted to the Outcome Registries Platform to ensure it is complete.

Supporting direct care, including: assessing the effectiveness of your care to improve trauma services; to enable local monitoring of key care metrics such as measuring outcomes; to support local benchmarking for the assurance of safe and high-quality care and treatment through local audit; for the management of untoward or adverse incidents; for measuring patient satisfaction by your care team.

Digital Health and Care Wales (DHCW): information which can identify you will be shared with DHCW via the Outcome Registries Platform to enable it to use this information in accordance with its statutory functions to support Local Health Boards in Wales.  

Data dashboards

Data dashboard reports containing aggregate anonymous data (which cannot identify you) will be made available to the following organisations for the purposes of data quality, operational measures and clinical reporting:

• tthe organisation the provided your care
• the Department of Health and Social Care (DHSC)
• regulatory bodies
• National Institute for Health and Care Excellence (NICE)
• Healthcare Quality Improvement Partnership (HQIP)
• National Advisory Group for Clinical Audit and Enquiries (NAGCAE)
• Royal College of Surgeons
• British Orthopaedic Association
• Society of British Neurological Surgeons (SBNS)
• Headway - the brain injury association
• Care Quality Commission (CQC)

Data from this collection may be shared with organisations for planning, commissioning and research purposes where there is a benefit to health and social care. It may also be shared with organisations where it is necessary for them to meet their statutory responsibilities.

Organisations have to apply and gain approval through our Data Access Request Service (DARS) and if approved, they must sign a Data Sharing Framework Contract and a Data Sharing Agreement.

Each application is assessed very carefully to make sure that: 

• the applicant organisation has a legal basis to access the data and NHS England has a legal basis to share the data
• the applicant organisation will use the data for the benefit of health and care and for the agreed purposes only 
• only the minimum amount of personal data is shared in accordance with data protection principles and the National Data Guardian’s Caldicott Principles. Identifiable patient data is only shared where it is absolutely necessary and where there is a legal basis to do so
• the applicant organisation will handle and store the data securely

NHS England receives DARS applications from organisations such as:

• government departments and Arm’s Length Bodies (ALB)
• NHS-funded service providers and commissioners
• the third sector community organisations; and
• organisations to support research and innovation and may include commercial organisations who will need to meet the DARS published Commercial Purpose Data Sharing Standard

Where a DARS application is approved, data may be shared for analysis through the NHS England Secure Data Environments, in line with NHS policy on Secure Data Environments.

We publish the details of approved DARS applications on our website. See the Data Uses Register

We protect your privacy by using methods such as:

• anonymisation - where information which can identify you, such as your name, address or NHS number, are completely removed responsibilities
• pseudonymisation – where a unique marker (a random string of letters and numbers) is used in place of information which can identify you
• derivation – where specific information is replaced with something more general, for example your date of birth is replaced with your age or your full postcode is replaced with a geographical region
• aggregation – where information about you and other patients is combined into broader categories, for example rather than using individual ages, the information is combined into age categories such as 0-17, 18-35, 35-50, etc

More information about these methods can be found on the Understanding Patient Data website. 

National Data Opt-Out

The National Data Opt-Out only applies where you have received NHS funded healthcare or treatment in England.  The National Data Opt-Out does not apply where you received your healthcare or treatment in Wales.

If you have registered a National Data Opt-Out, and have received NHS funded healthcare or treatment in England, NHS England can still collect your data under the Outcomes and Registries Directions 2024 This is because the National Data Opt-Out does not apply where NHS England has a legal obligation to collect the data.  See the National Data Opt-Out Policy for more information.

Where any data from this collection is shared with other organisations through our Data Access Request Service, the National Data Opt-Out will be applied in accordance with the National Data Opt-Out Policy.

You can find out more about and register a National Data Opt-Out or change your choice on nhs.uk/your-nhs-data-matters

The minimum retention period for Outcomes and Registries data is 8 years after the closure of the Outcomes and Registries programme.  This retention period will be reviewed regularly to ensure that the data is only held as long as is necessary our purposes in accordance with the Records Management Code of Practice 2021 and our Records Management Policy. 

Other organisations we share your personal data with must only keep it for as long as is necessary and as set out in their Data Sharing Agreement. Information about this will be provided in their privacy notices on their websites

The NMTR for NHS Wales data collection will be stored and processed within the United Kingdom (UK).

We have been given a legal instruction to collect and analyse data about patients treated for traumatic injuries by Health Boards in Wales.

This legal instruction is known as a request, which we received from Digital Health and Care Wales (DHCW) under section 255 of the Health and Social Care Act 2012. The request is called the National Major Trauma Registry (NMTR) for NHS Wales Request 2024 It provides the legal basis for NHS England to collect and use data for the purposes set out above.

Under the UK General Data Protection Regulation (UK GDPR), NHS England can only collect and use personal data if there is a legal basis under Articles 6 and 9 of the UK GDPR.

Our legal basis for collecting and analysing personal data is Article 6(1)(e) – public task.

Our basis for processing personal data related to health (special category data) is Article 9(2)(g) – substantial public interest. This is because it is necessary to process NMTR data is to comply with the National Major Trauma Registry (NMTR) for NHS Wales Request 2024 It is also substantially in the public interest to process this data to improve patient safety and improve future treatment. This processing is also permitted under Schedule 1, Part 2, paragraph 6 of the Data Protection Act 2018.

Under data protection law, you have the following rights over your data for this collection:

• Your right to be informed – You have the right to be told how and why we are processing your personal data.  We have published this transparency notice to provide you with this information
• Your right to get copies of your data – You have the right to ask us for copies of your personal data (right of access). For more information, see How to access your personal information or make a request in relation to other rights
• Your right to get your data corrected – You have the right to ask us to correct (rectify) your personal data if you think it is inaccurate or incomplete
• Your right to limit how we use your data – You have the right to ask us to limit the way we use your personal data (restrict processing) in certain circumstances
• Your right to object to how we use your data – You have the right to object to how we use your data in certain circumstances

To make a rights request, email us at [email protected]

Our Data Protection Officer is Jon Moore who can be contacted at [email protected]

NHS England may make changes to this Transparency Notice. If so, the 'last edited' date on this page will also change. Any changes to this notice will apply immediately from the date of any change.