All Secure Data Environments are required to adhere to legal frameworks which ensure that the data they store and manage are used safely and properly.
Therefore, the Yorkshire & Humber SDE stores and manages datasets in accordance with:
- The Codes of Practice under the Data Protection Act 2018
- The Data Ethics Framework
- The Standards set out by the National Data Guardian for Health and Care and regulatory bodies
- The Safe Output Service
- The Transparency Notice – NHS England Secure Data Environment Service
Every SDE also complies with the Five Safes framework. This internationally recognised system promotes best practices in data security, and consists of:
- Safe people: we make sure that only trusted researchers can access your data.
- Safe projects: we approve projects that can help the health and well-being of communities.
- Safe settings: secure technology is in place and the NHS data never leaves the SDE.
- Safe data: we remove personal details from data to protect your privacy.
- Safe outputs: all research outputs are checked to ensure people cannot be identified.
Keeping your data secure
We recognise that holding people’s healthcare records is a huge privilege. That’s why the SDE adheres to the highest standards to keep your data safe, transparent and secure:
- Only approved researchers working on approved projects can access and analyse fully de-identified data within the environment
- We use cutting-edge de-identification and pseudonymisation techniques to protect your privacy. It means the information will not include identifiers, so a person cannot be recognised. Identifiers include personal details such as your name, contact number, address, NHS number, etc.
- Access follows “least privilege” principles – researchers only see the minimum data needed for their approved project
You Control Your Data
You own your personal healthcare data. Sharing it can enrich high-quality research that helps others and can save lives. But you decide how it’s used:
- The Y&H SDE puts patient-centric approach first through keeping the local community informed about its activities, and regularly assessing public views on how data is used and stored
- Our “bottom-up” local governance ensures your GP practice and local data providers stay involved, shaping what data is shared and how.
- We will share our research findings with you and the local community through case studies, so you know exactly what’s happening inside the Y&H SDE.
Building Trust Through Transparency
At the Y&H SDE, we are committed to complete transparency with public and the organisations providing data:
- Regular reporting to your GP and local data providers on all data usage and analysis outputs
- We encourage closer collaboration between health and care data teams, and researchers, allowing them to share techniques and methods to translate high-quality research into practice
- We are committed to ensure that everyone is fully informed about how their data is used. Therefore, we are proactively engaging with public to help us developing the Y&H SDE and improve healthcare research in our region and beyond.
To learn more about how your NHS data is kept safe, visit Introduction to Health Data Security in the NHS by Understanding Patient Data.
In our podcast episode below our Data Lead, John Birkinshaw and Megan Wood from the University of Leeds, explain how secure data environments like Yorkshire and Humber SDE ensure data de-identification and security.