Worried About Your Privacy? Here’s How to Stay in Control
Your health information is valuable—not just to you, but also to researchers and healthcare planners working to improve the NHS. While sharing data can benefit the nation’s health, we understand you might have privacy concerns. That’s why the NHS gives you choices about how your health information is used.
We’ll explain the options available to you so you can make an informed decision that best protects your privacy.
What Are Your Options for NHS Data Sharing?
You have two main choices to control how your data is shared:
- Type 1 Opt-Out: Stops your GP practice from sharing your data for anything other than your direct care. If you don’t want your GP information used for research or planning, you can ask to opt out.
- National Data Opt-Out stops the NHS from using your identifiable data for research and planning. Data collected across NHS services (like hospitals) will not be used for research projects or service improvements without your permission.
Why Share Your Data?
Sharing your health information helps researchers discover better treatments, allowing the NHS to plan and improve the healthcare services we rely on. But you have a right to decide if you’re comfortable using your information this way.
NHS Data Programs You Should Know About
The NHS uses different systems and programs to manage and share health data. Below, we’ve broken down what they are, their benefits, and what opting out means for each:
| Program | Description | Benefits | Can You Opt Out? |
|---|---|---|---|
| GPDPR (General Practice Data for Planning and Research) | Collects data from GP practices to help plan services and support health research. | It helps improve NHS services and medical research. | Yes: Type 1 Opt-Out and National Data Opt-Out apply. Learn More |
| Palantir Federated Data Platform | Integrates data from various NHS sources to help managers make better decisions. | Supports efficient resource allocation and improves patient care. | No: National Data Opt-Out will not apply [last checked 04/11/2024] “The national data and type 1 opt outs do not apply to the data processed in the current Products on the platform under the policy. If that changes we will update this page and our privacy notices.” Learn More |
| Hospital Episode Statistics (HES) | A record of hospital visits, including A&E attendances. | Helps plan hospital services and research. | Yes: National Data Opt-Out applies. Learn More |
| National Cancer Registration Dataset | Tracks cancer cases to improve treatment and outcomes. | Helps improve cancer care, policies, and treatment research. | Yes: National Data Opt-Out applies. Learn More |
| Mental Health Services Data Set (MHSDS) | Information about those in contact with mental health services. | Improves mental health services and guides support allocation. | Yes: National Data Opt-Out applies. Learn More |
| National Child Measurement Programme | Measures the height and weight of children in schools. | Helps tackle childhood obesity. | Yes: National Data Opt-Out applies. Learn More |
| National Diabetes Audit | Tracks diabetes care to help improve treatments. | Helps improve diabetes care quality. | Yes: National Data Opt-Out applies. Learn More |
How the Type 1 and Type 2 Opt Outs can work together to protect your privacy
How to get NHS Type1 and National Opt-Outs
Need More Information?
If you’re unsure about what’s right for you, or if you want more details on how the NHS uses your data, visit the NHS Your Data Matters page.
Remember: Sharing your data can help the NHS make better decisions, improve healthcare for everyone, and support research that could save lives. But it’s your data; you can decide how it’s used.
Take Control of Your Health Data Today
Whether you choose to share your data or opt-out, the best way to ensure your privacy is respected is to be informed and take action.