Information about all people using health services can help plan and improve future services. This might be by looking at data about:
- who is using services. For example, looking at how many children are born to plan services for young people, or
- by doing research to develop new care and treatments.
By linking together small amounts of data from lots of patients, planners and researchers can look for patterns. This helps them identify ways to improve health and care services. The information is really valuable to help to:
- understand more about disease
- develop new treatments
- monitor safety
- plan services and
- see if NHS policy is working.
To carry out useful planning and research, it is important to ensure the data on everyone is accurate and complete. This video provides a short summary of why we need data from everyone and how large data sets are used. Find out more in the guide created by Understanding Patient Data available here.
We know from the Covid-19 pandemic that data saves lives.
We are working locally to create better access to accurate and complete data. For individual care and local planning we are working to link patient records, for example between hospitals and GPs and between hospitals.
Data for research
Nationally, the Data Saves Lives Strategy set out a commitment to increasing public confidence in how data is used and protected. This strategy responded to the Goldacre Review and reinforced that we would:
- move away from data sharing to data access
- ensure that data does not leave the NHS.
Part of the Strategy is to establish Secure Data Environments (SDEs). These will become the way to access NHS health and social care data for research and analysis, whilst ensuring the highest standards of security and confidentiality.
SDEs will allow access to data in a controlled and recorded manner. This will put an end to the routine sharing and distribution of healthcare data for research purposes.
Secure data environments (SDEs)
The NHS Research Secure Data Environment Network covers the whole of England and is made up of 11 regional SDEs and one national environment (NHS England SDE, formerly NHS Digital). These centres can work individually or together to support approved research. The regional SDEs are NHS owned.
SDEs will provide secure storage for patient data. People, like university or industry researchers, can apply to become approved users to access this data. The data they can see is agreed before they are given access. The data will not leave the NHS.
Legal and Ethical Framework
SDEs must comply with existing legal frameworks to keep data safe and used correctly. The UK has high data protection standards to control how personal information is used. These include;
- The Codes of Practice under the Data Protection Act 2018
- The Data Ethics Framework
- Standards set out by the National Data Guardian for Health and Care and regulatory bodies.
Secure Data Environments must also adhere to the Five Safes Framework, an internationally recognised approach to promoting best practise in data security and privacy.
The data will include information from hospital records – including pathology, imaging, and genomics – and primary care.
Further information about NHS data and Secure Data Environments can be found here with updates and work in progress available here.
How is information kept safe?
We process and store your information safely, and securely, in line with the law: the Data Protection Act 2018, the General Data Protection Regulations (GDPR) and the NHS Act 2006.
Using My Data
You can choose whether your patient data is used for planning and research. If you’re happy with your information being used you do not need to do anything.
Your choice will not affect your care
If you would like to know more about your choices, or to opt out of the Thames Valley and Surrey Secure Data Environment, please contact us by completing the below form:
Or by:
- 01865 227300
- tvssde@ouh.nhs.uk
- TVS SDE, Executive Offices, John Radcliffe Hospital, Oxford OX3 9DU
We will ask for your name, date of birth, postcode or NHS number so that we can register your choice.
To find out more and register your choice nationally, please visit www.nhs.uk/your-nhs-data-matters
Further information about your choices is available at Understanding Patient Data.
