Public information - Secure Data Environment

How your health information improves lives

Your health and care records help us care for you. They also have the power to unlock new treatments, medicines and devices.

Did you know?

Lots of different places hold parts of your health and care record. GP, hospitals, mental health, voluntary and social care services can all hold a piece.

This information helps healthcare workers care for you. But it can also help researchers make new discoveries. When we can link lots of records together it helps us spot patterns. This knowledge can improve the health of people who live nearby and future generations.

How will my information be accessed?

Researchers and planners contact the NHS to ask for information from patient records. This information is hard to access and share.

In time, this way of sharing will stop. Researchers will need to apply to a Secure Data Environment. This is a specially designed space for health and care research and planning. This keeps the information in the NHS and only approved people can see it.

How is my information kept safe?

Anyone who wants to access the Secure Data Environment needs to send a request. We remove details like your name so the researcher wont know who you are.

They must:

Work in a trusted place like a university or an NHS hospital
Have training on keeping the information safe

The project must:

Meet legal, security and ethical standards
Be in the public interest

Understanding Patient Data

Understanding Patient Data have produced this animation which explains how Secure Data Environments work. You can link to their website too - Secure Data Environments | Understanding patient data which explains how information is used in different ways.

Benefits to patients

New medicines Biomedical companies and universities can develop new treatments based on the information from lots of people with similar conditions.

Improved NHS services Public health experts can better plan healthcare services, so the right services are there for local people’s needs.

Better outcomes Researchers can analyse patient data to see which treatments work best, leading to even better care.

You can also find out more about how patient records benefit research and planning on the NHS England Powered by Data website.

Health and care information will be stored in a space known as a Secure Data Environment. This will bring researchers and healthcare planners to the data, rather than sharing and making copies. Only approved individuals will have access to it the data and only for a specific project.

Health and care records are well protected under the law. Health and care staff and researchers must have specific permissions to use personal health information and any organisation that holds this, like your GP practice, is the legal controller for that data.

When health and care information is made available for research, information which could identify you, like your name and address is removed, or replaced with a code so we can link records from different places together.

We take care in removing information like your name and address before it goes to the Secure Data Environment. All the information is stored securely with tight controls which meet strict legal, cyber security and ethical standards. The data is always held within the NHS.

A group of members of the public assess whether the project is in the public interest. Then, the Data Access Committee, which includes members of the public, health and care staff, legal experts review all applicants and projects that want to access to the Secure Data Environment. The outcomes of these reviews are shared on our website so you can see the type of research or planning being done.

Anyone who wants to access your health and care information for research or planning needs to send an application covering why they want to access it. They must work in a legitimate organisation such as a university or a NHS organisation. They must also have training in how to use the Secure Data Environment – and how to keep patient information safe.

Your information will not leave the Secure Data Environment so it stays in the NHS. The analysis of the data is checked before it can be removed from the Secure Data Environment.

Find out more about how your data is used for research and development here: Introducing patient data | Understanding patient data

When used for research and planning, your health data is handled with care and usually falls into three main categories:

Personal data

This is information that can identify you directly, like your name, address, date of birth, or NHS number. Personal data is used to provide you with healthcare but is not shared for research purposes.

Pseudonymised data

Pseudonymised data means that personal identifiers, such as your name and address, are replaced with a code. While your data can still be linked back to you by authorised professionals, if necessary, it’s de-identified for researchers. This means they can’t tell who you are but can still analyse trends or patterns in health conditions and treatments across large groups of people.

Example: A clinical research team studying diabetes outcomes might use pseudonymised data to see how patients responded to a new treatment. They don’t need to know individual names, but they can link your health data to others with the same condition to find trends.

Aggregated data

Aggregated data is combined from many people and summarised to show broader trends without identifying anyone. It’s used to understand public health issues or how diseases affect different populations and regions.

Example: Public health officials may use aggregated data to see how many people in a certain area have heart disease. This helps them plan services like local heart clinics but doesn’t reveal any personal details about the patients.

Your NHS number is unique to you. It helps healthcare staff and service providers identify you correctly and match your details to your health records.

This can be used to link your across different health and care settings as you might be cared for in different places.

To help us protect your identity, but also link your records, your NHS Number is replaced with a unique code.

Who has access to my health information?

We keep a register of all projects who access health information on the Secure Data Environment.

Currently there are two projects who are accessing the Secure Data Environment.

Project name: Patient Safety Research Collaboration (PSRC) - Polypharmacy

Project code: SDE_NENC_PROJ_5

Applicant: Newcastle University

Data type: Grouped (small numbers hidden)

Project description: The goal of this project is to understand how taking lots of medicines (polypharmacy) and having several long-term health conditions affect people in the North East and North Cumbria.

People are living longer, but this means they often have long-term health problems. Because of this, many need to take more medicines. Taking five or more medicines is called polypharmacy. This can cause problems, especially for older people, such as becoming frail, needing to go to hospital more, or medicines reacting badly with each other. These problems are sometimes called inappropriate polypharmacy.

Some studies have looked at polypharmacy in poorer communities or among people from ethnic minorities. These groups may be at higher risk of taking too many medicines that could cause harm, but we still don’t know exactly how bad the problem is.

This project will focus on understanding how common polypharmacy is in the North East and North Cumbria. It will also look at the link between taking lots of medicines and having more than one long-term health condition. By using data about people’s backgrounds in different areas, the project will study how polypharmacy affects people in disadvantaged communities. The aim is to help those most at risk and suggest ways to make things safer for patients.

Date of agreement: Not applicable, no personal data being processed

Period of data access agreement: Not applicable

Project name: AI Multiply Using artificial intelligence (AI) to characterize the dynamic inter-relationships between MUltiple Long-term condiTIons and PoLYpharmacy and across diverse UK populations and inform health care pathways

Project code: SDE_NENC_PROJ_1

Applicant: Newcastle University

Data type: Pseudonymised Record Level - people's names and contact information is replaced with a code which allows their health information to be linked, but they can't be identified.

Project description: Many people live with two or more long-term health problems, such as cancer, heart disease, or mental health conditions. These health problems, called Multiple Long-Term Conditions (MLTCs), can lead to worse health and shorter lives.

Treating MLTCs can be tricky. Often, people need to take lots of medicines—this is called polypharmacy when it’s five or more. But taking lots of medicines can sometimes cause new problems if the drugs don’t work well together.

The AI MULTIPLY project wants to make treatment better for people with MLTCs. It will look at how these conditions and taking many medicines are connected. The project will also study how personal and social factors affect polypharmacy. By learning more about these links, the project hopes to create fairer healthcare for everyone.

Date of agreement: 07 May 2024

Period of data access agreement: One year

Can I opt out?

Health and care records are already used to support research, planning and evaluating health and care services. People do not have to give permission for their health and care data to be used for this, but there are strict rules around how health records can be used, stored and shared.

Nevertheless, you can opt out of having your identifiable health records used for research and planning.

There are two ways you can opt out.

Local opt out: You can contact us to stop your information going into the Secure Data Environment. Contact us at nencicb.sde@nhs.net

National Data Opt Out: Stops your information being used nationally for research and planning. If you have already used set the National Data Opt Out, your records will not be included in the Secure Data Environment. Visit https://www.nhs.uk/your-nhs-data-matters/ for more information

How we are working with the public

We have a strong commitment to public and patient involvement in teh Secure Data Environment programme. We have developed an extensive strategy that actively involves, listens to and engages with the population of the North East and North Cumbria.

Our approach builds upon the successful public engagement work as part of the Great North Care Record programme. We continue to work closely with the public, engaging them in discussions about how we manage and make information from their health and care records accessible to researchers and planners. Together, we are developing clear principles to ensure transparency and trust in how data is made accessible.

Meet two of our public members

Chris Lloyd

Susan Mountain

Our public members play a key role in the Secure Data Environment. Not only do they help shape our thinking and direction, they are included in our key decision making groups. We 14 people from different backgrounds who we recruited to advise and guide the programme.

They are all interested in health data and research and are all passionate about how health and care information can be used to improve health outcomes.

Our public members will assess applications from researchers and healthcare planners to see if the project is in the public interest.

We have commissioned three reports to explore more about what people in our region think about sharing their health and care data for research.

A summary of the findings in the three reports is available to read, you can also read each individual report in full:

A further street survey was carried out in August 2024 which explored in more detail how people in our region feel about their health and care records being used in the Secure Data Environment. A further 1000 people living across the region gave us their views. Read the report in full.

Where can I find out more?

Understanding Patient Data has a range of resources and materials which explain how health and care information is used in different ways: https://understandingpatientdata.org.uk/secure-data-environments

Find out how your data is used in the Secure Data Environment in our Privacy Policy.