Data Access Request Service: Public engagement and involvement

Health data is information recorded when people use NHS services, such as GP care, hospital treatment or community services.  It can include GP records, hospital notes, test results and information about care in the community.  

When information from different parts of the NHS is brought together, it forms datasets. NHS England uses these datasets to understand trends, plan services, improve patient care and support health research.  

Dataset information is available through the DARS products and services data set catalogue. 

Research: health data helps researchers understand diseases, develop treatments and improve outcomes. One example is: NHS data enhancing road safety

Planning services: health data helps the NHS and public sector organisations identify where support is needed most and target resources more effectively.

Organisations must meet strict security standards and sign legal agreements that set out how data can be used. 

Data is de-identified where appropriate, and NHS England regularly reviews and audits arrangements. 

NHS England is increasing the use of Secure Data Environments, where approved researchers access approved data for approved projects without removing it from the secure system.

Only approved organisations and users can access NHS data. 

Applicants may include NHS organisations, universities, academic researchers, charities, medical research organisations and some commercial organisations working on health and care research or service improvement. 

Commercial organisations must clearly show public benefit, for example through medical research, clinical trials, new treatments or technologies, or improvements to NHS services. 

There are fees to cover the cost of processing and managing requests for data. The data itself is not sold.

NHS England does not sell NHS data. We do not allow access to data by insurance companies, or for commercial exploitation. Requests for access will be refused if they are for: 

• marketing, promotion or sales 

• market research or advertising 

• insurance purposes, including setting premiums or commercial gain 

Every request is reviewed against strict standards by NHS England staff and independent experts. 

Applicants must meet data security requirements and agree to legal controls on how data can be used. 

To support transparency, NHS England publishes approved requests in the Data Uses Register and publishes minutes from the independent advisory group The Advisory Group for data (AGD). AGD includes lay members who share their experience as a patient or unpaid carer.  

Public involvement helps NHS England understand public concerns on data access, build trust and improve how data access requests are reviewed. 

We involve patients and the public through surveys, focus groups, co-design work, engagement with charities and voluntary sector groups, and public and patient voice partners in meetings and working groups. 

Public feedback has helped improve transparency, including feedback on the data uses register that is supporting changes to the register. A glossary on key terms has also been coproduced with a public member group.  

NHS England will continue to review and improve its processes based on public feedback. 

We collect, process, and work with your health data. Learn more about how we collect, process, and work with your health data. We process a lot of data for your direct care and we also use data in a secure and confidential way for research, planning, and managing the NHS more effectively. You can choose for your data not to be used in this way.