How the Y&H SDE works
The Y&H SDE is a federated model that allows the local control of the data by local providers. Equally, with consent from local data providers, the Y&H SDE can carry out all their functions on their behalf.
Once both the researcher and the project are verified and approved, the datasets are securely provided for the relevant research purposes. Before the data can be used, it undergoes de-identification, ensuring that sensitive personal information is replaced with pseudonyms to safeguard individual privacy.
In case researchers have any questions or require clarification regarding provided datasets, the Y&H SDE encourages collaboration between researchers and data providers.
When the research project is completed, the data is removed from the SDE. Researchers are allowed to obtain an anonymous summary of the data analysis conducted within the SDE and include any findings or insights within the metadata of the used datasets.
Check how we keep the NHS data secure in Our Security Promise.
Public involvement and engagement is the core to our approach and has shaped the development of our SDE. We are committed to ensure that everyone is fully informed about how their data is used. Therefore, we are bringing together a network of people to share knowledge and information.
By joining our discussions, you’ll help shape the Y&H SDE to improve healthcare research in our region and beyond. This is your data, and your voice matters.
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.
Opt-Out
If you are comfortable with your de-identified healthcare records being used for research studies and initiatives to improve NHS services, you don’t need to take any action.
However, you have the choice to opt-out and prevent your fully de-identified healthcare information from being used in this way if you prefer. This is entirely your decision, and it will not impact the care you receive in any way.
To opt-out, you can use the national or GP data opt-out services provided by NHS: Opt out of sharing your health records – NHS (www.nhs.uk)
If you choose to stop your records being used for research and planning, your data might still be used in some situations. Learn more here: https://www.nhs.uk/your-nhs-data-matters/where-your-choice-does-not-apply/
Access Data We Hold About You
You have the right to request information about yourself through:
To inquire about your data used in the Y&H SDE, please contact us at: YHSDE@bthft.nhs.uk