How your data is used

We get data from many places. The main ones are:

• Hospital Episode Statistics (HES) These come from all NHS trusts in England, including acute hospitals, primary care trusts and mental health trusts. This data is collected during a patient’s time at hospital. It includes details of diagnosis, treatment received and other details about the patient. HES information is stored as a large collection of separate records – one for each period of care.
• Patient Report Outcome Measure Data (PROMs): This data measures health gain typically in patients undergoing hip or knee replacement but is also used to measure a patient’s health or health-related quality of life at a single point in time. This dataset lets us see whether there is any relationship between a gene variant and how well patients do after treatment or surgery.
• Mental Health and Learning Disability Set (MHLDS): This is used to analyse patient pathways and enable a deep understanding of mental health service users’ interactions with acute secondary care. For the project it is a particularly important data set as many participants with rare conditions have learning disabilities. But it also helps us see whether mental health problems such as depression are an unrecognised symptom of a genetic variant.
• Diagnostic Imaging Dataset (DID): a central collection of detailed information held by NHS Digital about diagnostic imaging tests carried out on patients, such as XRays and MRI scans. This data can provide insights into whether particular gene variants are associated with a particular tumour or condition.
• Mortality Data: Cause of death is a crucial piece of information. If a patient dies of a different illness, or in an accident, we need to record this as otherwise it will skew the data. And if people die earlier, or live longer than expected it will help us pick out the variants associated with this. Having mortality data will also reveal if people with one condition die disproportionately from another, such as heart attacks. Approval to link to this data with Office of National Statistic Data (which records deaths) must be granted by both NHS Digital and the ONS.
• Participants in the 100,000 Genomes Project cancer programme give their explicit consent to allow their patient records to be linked to the data collected by the National Cancer Registration and Analysis Service.

The Genomics England Research Network is a global community of researchers with access to our Research Environment.

This secure workspace provides a place for them to carry out research on de-identified datasets in the National Genomic Research Library (NGRL), to gain new insights about genomics and our health.

Researchers who are approved to become a member of the Research Network work in 8 cross-cutting communities across different areas of genomic research.

Because very little is still known about the human genome, bringing together researchers to examine and interpret the data will mean that our knowledge about disease and how it could be treated will be vastly improved.

Approved researchers access genomic and other health data stored in the National Genomic Research Library via a secure Research Environment.

Research users will have restricted access to de-identified datasets which contain only the information they need for their specific and approved research study.

Genomics England’s research environment allows approved researchers to access de-identified samples, genomic data, and other associated health data stored in the National Genomic Research Library.  

The research environment is a reading library not a lending library so individual patient and participant data stays within the research environment where it can be analysed by researchers.

Only summarised results of analysis can be exported and researchers must submit requests to extract this information from the research environment to ensure that the data cannot be used to identify participants and patients. We call the process by which information and data is securely moved in or out of any Genomics England Research Environment, the 'Airlock’ process.

Clinicians will receive feedback on participants in their care in a downloadable clinical report.

NHS clinicians will have access to data on patients in their care free of charge.

Approved academic researchers will also have access to de-identified data free of charge, subject to their research study being approved.

Genomics England charges industry researchers because providing data storage, security and analytic services is costly and we believe for profit companies accessing the data for research purposes should contribute to these costs.

Genomics England does not share data with health insurance companies, and we are committed to the ethical and responsible use of genomic data for the advancement of medical research and healthcare. Use for insurance purposes is explicitly prohibited in our National Genomic Research Library Governance Framework.

We have a long history of developing ethical governance frameworks for safe access and use of data from previous projects including the 100,000 Genomes Project.  

The security of the data that we are custodians of is of crucial importance to us and we remain vigilant to ensure we are protected against current and evolving threats and work closely with colleagues across the public and private sector including the National Cyber Security Centre (NCSC).

Our approach recognises the different types of data we hold and the importance of putting special protection around the patient and participant data including their genomic and health data. This means, among other things, putting in place additional layers of security and monitoring as well as segregating systems that control access.

Maintaining data security and protecting the privacy of participants is of the upmost importance to Genomics England.

All individual researchers from all institutions are expected to comply with Genomics England’s policies on the use of the research environment and data extraction. 

Genomics England has penalties in place for any organisation or individual who breaches or attempts to breach a participant’s identity confidentiality. This includes revocation of user access, withdrawal of access for the organisation the offending user is employed or contracted to, and the reporting of the offending activity to the Information Commissioner.