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, read Yorkshire and Humber SDE Principles.