Data Linkage and Extract Service
Important update for Customers
We have written to our customers and partners to explain the impact of the review we are undertaking into our processes for the handling of the release of data. The letter [105kb] provides more detail and the interim arrangements we have put in place while the review is underway.
What is the Data Linkage and Extract Service?
The Health and Social Care Information Centre handles three different types of patient-level data:
- De-identified data for publication - data that can be publicly disclosed as it has been anonymised and there is a low risk of individuals being identified.
- De-identified data for limited disclosure or access - data that has been through a process of pseudonymisation, however there remains a risk of individuals being identified.
- Personal confidential data - data in which individuals are identified, or there is a high risk of individuals being identified.
Aggregate data is made available via the HSCIC's statistical publications and reports. The data underpinning them is type 1 (as above) and, where possible, this is released as Open Data. You can browse, search and filter these freely available documents and files using the HSCIC catalogue.
The Data Linkage and Extract Service offers a range of products which enable customers to access type 2 and 3 data (as above). We can provide extracts from a range of individual and linked data sets and can add significant value to individual sets of data by combining and matching them at individual record level in a secure environment.
Data can only be made available to those who meet the HSCIC's robust Information Governance standards to protect and control how data is managed and, where applicable, an appropriate legal basis is in place.
Who are our products for?
Our products are used by a wide range of customers including academics and universities, healthcare commissioners and providers, third sector organisations, information intermediaries and commercial organisations including life science companies. To find out how our products are being used, please visit our case studies and testimonials page.
The data we supply is normally pseudonymised. We only provide identifiable data when there is a lawful basis to do so i.e. with patient consent, approval under section 251 of the NHS Act 2006 which enables The Health Service (Control of Patient Information) Regulations 2002, or where appropriate statutory regulation is in place.
Customers accessing data through our service are required to sign a data sharing contract before any data is supplied. This contract regulates how the data is shared, used and managed and includes storage security requirements and restrictions on onward sharing or publication. The data sharing contract states that customers must not attempt to link the data with other data sources such that individuals might be re-identified.
For further information, please read our guidance on applications, approvals and charges.
Clinical Practice Research Datalink
We have a strategic partnership with the Clinical Practice Research Datalink (CPRD), the English NHS observational data and interventional research service. If you are conducting formal, protocol-based research then we may refer you to them. If you are unsure whether your request should be handled by us or CPRD, please contact us for guidance.
Review of data sharing approvals processes
The HSCIC is still a relatively new organisation, operating in a fundamentally re-structured Health and Social Care system and within the new legislative framework of the Health and Social Care Act 2012.
A key objective of the HSCIC is to develop public trust through being a transparent organisation that operates and makes decisions against clear and open policies and processes.
We are therefore undertaking work to improve our policies, processes and governance for the sharing of data to ensure that they are fully robust and transparent.
Whilst this work is being undertaken, the approval processes for renewals and new applications is likely to take longer than normal due to additional scrutiny.
We apologise for any inconvenience this may cause.
What data is used?
The Data Linkage and Extract Service uses a range of data sets. Click on the links below to find out more about them.
Hospital Episode Statistics
Hospital Episode Statistics (HES) contains around 1 billion records on patients attending Accident and Emergency units, being admitted for treatment or attending outpatient clinics at NHS hospitals in England.
Patient Reported Outcome Measures
Patient Reported Outcome Measures (PROMS) contains pre and post-operative survey data collected from patients receiving hip replacement, knee replacement, hernia and varicose vein surgery.
Secondary Uses Service Payment by Results
Payment by Results data taken from the Secondary Uses Service (SUS PbR) applies standard national tariffs to secondary care data, providing a rich source of national payment information.
Mental Health Minimum Data Set
The Mental Health Minimum Data Set (MHMDS) provides record level pseudonymised data about patient spells of care in NHS-funded adult specialist mental health services, combined with a range of patient-level demographic detail.
Diagnostic Imaging Dataset
The Diagnostic Imaging Dataset (DID) is a collection of data on NHS-funded diagnostic imaging tests, such as MRI scans and x-rays, extracted from NHS providers' radiological information systems.
NHS Registration Data from the Personal Demographics Service
The Personal Demographics Service (PDS) is the national electronic database of NHS patient demographic details such as name, address, date of birth, NHS Number and registered GP.
Cancer Data from the Office for National Statistics
Cancer data from the Office for National Statistics (ONS) contains information about cancer registrations including site, type and histology.
Mortality Data from the Office for National Statistics
Mortality data from the Office for National Statistics (ONS) contains information such as the date, place and cause of death.
Primary Care Data
The General Practice Extraction Service (GPES) is a centrally managed primary care data extraction service that extracts information from GP IT systems for a range of purposes at a national level. It also forms part of the new process to provide payments to GPs and clinical commissioning groups (CCGs). GPES plays an essential role in the information needs of the NHS. Due to the specialist nature of primary care data, GPES operates different application and approvals processes and charges.
Routinely Linked Data Sets
Linking data sets together has the power to inform better decisions about care, improve quality and safety standards and identify developing trends in population health. The HSCIC routinely links a number of data sets:
Hospital Episode Statistics linked to Patient Reported Outcome Measures
Data from PROMs questionnaires alone allows for a wide range of basic analysis but is limited by the lack of more detailed information about patients and their hospital stays. Linking PROMs to hospital inpatient episodes data from HES gives a much richer data set which provides the ability to analyse the data by patient demographics and by the extensive procedure and diagnosis information which are present in HES.
Hospital Episode Statistics linked to Mortality Data from the Office for National Statistics
Linking HES data to mortality data from the Office for National Statistics permits the analysis of deaths in and outside hospital for all patients with a record in HES. It is also a rich source of data for analysis on a wide range of subjects including outcomes of hospital care, such as postoperative mortality.
Hospital Episode Statistics linked to Mental Health Minimum Data Set
The linkage between HES and MHMDS is provided as a bridging file which enables mental health records to be matched with records in HES through a pseudonym that protects the identity of individual patients. This enables analysis of acute patient pathways for mental health service users in England, which could be used to assess equality of access or identify opportunities for service improvement.
Hospital Episode Statistics linked to the Diagnostic Imaging Dataset
The linkage of HES to the DID enables customers to analyse acute secondary care pathways for patients receiving diagnostic imaging tests in England. This analysis could help to identify trends and variation in patient outcomes and be used to improve services for patients.
The HSCIC will be making further data sets available and routinely linking them on an on-going basis, providing valuable new insights into patient care. Visit the Data Linkage and Extract Service development timeline to find out more.
What products are available?
Our products are flexible and can be tailored to meet your requirements. If the product you require is not listed below, please contact the HSCIC contact centre to discuss how we can help on tel: 0845 300 6016 or by email.
We can provide statistical tables of data, customised to meet your requirements, for HES, MHMDS, and the HES routine linkage to DID.
We can provide standard extracts of HES, SUS PbR, DID, MHMDS, and any of our routinely linked data sets monthly on a subscription basis. We will provide you with provisional year-to-date pseudonymised data. Identifiable data may be provided where an appropriate legal basis is in place.
We can provide bespoke record-level extracts from HES, PROMS, SUS PbR, DID, ONS mortality data, and any of our routinely linked data sets. These can be provided on a one-off or regular basis as required. We will provide you with an extract of pseudonymised data that meets your specifications. Identifiable data may be provided where an appropriate legal basis is in place.
Bespoke data linkage
We can link data sets to your specifications, linking two or more sets of data that we hold, linking customer data to data that we hold, or linking two or more sets of customer data. Subject to the relevant approvals, this product is available with HES, PROMS, DID, ONS mortality data, and any of our routinely linked data sets at a frequency of your choice.
Patient status and tracking
We can provide the demographic status of a specific group of patients or track them over a period of time and provide regular updates using PDS, ONS cancer data and ONS mortality data.
How do I apply?
The application processes and the required approvals for our products vary from case to case and depend on whether you are applying for personal confidential data, the legal basis for your application, and the related legal gateways.
Visit our applications, approvals and charges page for further information and to gain an idea of the timescales involved.
What do the products cost?
The HSCIC is publicly funded and we therefore operate on a cost recovery basis. We do not charge for data itself but do apply charges to cover the costs of processing and delivering our service.
Charges for our products vary depending on the complexity of the work involved and the quality of any third-party data submitted.
How can I make an enquiry or provide feedback?
To discuss your requirements and gain advice on making an application, please contact the HSCIC contact centre on tel: 0845 300 6016 or by email. We are keen to hear your views on how we can improve our web content and develop the products we offer. To provide your feedback and suggestions, please complete our feedback form.