Sharing Health Information: Your Data, Your Choice

Your opportunity to shape the way health data is shared and used in the NHS.

Health and care information is important for delivering care and improving services for the future. NHS led Secure Data Environments are a new initiative that will aim to be a safe way of accessing health and care data to conduct research. This research will enable improvements in care. Secure Data Environments are a national initiative but will be developed locally by each region. We are developing the Great Western Secure Data Environment, and this is your chance to help us shape plans.

What is health and care information?

Your health and care information is held by organisations that provide care for you, like your hospital or GP. Data is often used and stored in different ways depending on its purpose. For example, your data might be used by your doctor to help give you the right care. In this case, your doctor will need to know who you are. For other uses of data, such as research to find new treatments or develop services, your data can be processed in a way that removes any information that would link that data back to you or reveal your identity.

Research already happens using healthcare data in various ways. Secure Data Environments are working locally to create better access to up-to-date and accurate data for research, but in a way that makes sure we are improving the standards of security and confidentiality.

What is a Secure Data Environment (SDE)?

Secure Data Environments are highly secure computing environments that provide secure access to health data for approved researchers conducting health and care research that can save and improve lives. SDE’s put virtual walls around data to ensure that users only have access to data necessary for conducting approved research.

This is a way of better controlling who has access to data to ensure they are using it appropriately and aims to prevent the need for data to be sent or copied where possible.

How is information kept safe?

Secure Data Environments will adhere to information governance standards and will be reviewed by the Health Research Associations’ Research Ethics Committee and Advisory Group. These environments will have to go through a strict accreditation process to ensure they are suitable, meaning Secure Data Environments will apply the highest security standards, and be rigorously tested to ensure these environments improve the safety, confidentiality, and ethical use of data.

What are my choices?

You can choose whether your patient information is used in research in secure data environments. This will be managed through an opt-out process.

This meeting is an opportunity to learn about and shape the development of the Great Western Secure Data Environment. Members of the team will be available to answer questions. Your insights and opinions are invaluable as we shape this new initiative to best meet our community’s health needs.

Join us to:

• Understand the SDE’s role in health and social care research
• Discuss the security measures ensuring data privacy and integrity
• Explore how the SDE can help tackle significant health issues in our region
• Give your thoughts and concerns, shaping the future of healthcare research

How to book

If you would like to attend please e-mail Katie Gordon at katie.gordon4@nhs.net, clearly stating the date and time of the workshop you would like to attend.