About the Cheshire and Merseyside Secure Data Environment (SDE)

The Cheshire and Merseyside Secure Data Environment is an online platform that securely stores health and care data.

It brings together information from several important areas of health and care within Cheshire and Merseyside. This includes GP practices, community and mental health services, hospital services, and social care.

The Cheshire and Merseyside Secure Data Environment will be used by health, care and research professionals to plan health and care services, carry out research, and make sure that patients receive the best possible care. This includes academic partners from universities. In the future, we may work with other industry or non-NHS partners. An example of this would be working with a pharmaceutical organisation to explore the potential of new treatments for health conditions. Another example would be working with social services to understand how we can help people with complex health and social care needs, such as elderly individuals with multiple chronic conditions or individuals with disabilities requiring both medical and social support. We will engage with the public before we develop these types of partnerships. 

The Cheshire and Merseyside Secure Data Environment is part of a wider regional and national NHS Secure Data Environment network, and it will support the new North West Secure Data Environment.

Information collected by health and care organisations helps to improve care for patients and speed up diagnosis. It can also help with planning local health services and with researching new treatments.

Data saves lives. It also saves everybody time and the NHS and care services money that can be put back into patient care.

Patient data is already used in research, but Secure Data Environments will standardise this process to make it more efficient and to improve data security.

They have been designed to realise the untapped potential of NHS data by improving:

• Patient privacy – SDEs must ensure information remains confidential at all times.
• Security – NHS data will only be hosted on systems with high levels of protection.
• Efficiency – SDEs enable different sources of data to be linked, giving researchers access to bigger sets of data faster.

Note: In the event of clinically significant incidental findings, there will be a process in place to inform patients via the patient’s direct care team.

How we keep data secure

Secure Data Environments are designed to give NHS data more protection. They store de-identified health and care data. That means that personal information – such as names, addresses and NHS numbers – are replaced with artificial, or “pseudo”, information.

Secure Data Environments also use data aggregation and data minimisation to protect privacy. Data aggregation combines and summarises information so that trends and patterns can be analysed. Identifiable data is made less detailed. For example, the data would not include dates of birth for individuals, but rather age bands. It would not include addresses, but area postcodes. Data minimisation means that to protect a patient’s identity, such as those with a rare disease, the database does not allow release of small amounts of data.  All unnecessary details are removed.

Only approved researchers will be able to access the Secure Data Environment. Researchers will be required to sign a researcher agreement, which includes consequences for any breachers. They will also only be able to use tools to analyse the de-identified data on the platform. They cannot download the data.

The Cheshire and Merseyside Secure Data Environment will not be used for genomic data. If this were to occur in the future, a new application for ethical approval would be made.

The data is processed and stored under strict confidentiality and access rules by:

·         Graphnet System C, who process data for secondary uses via the Shared Care Record

·         Arden & GEM, an NHS organisation that processes national and local data for secondary uses via the Data Service for Commissioners Regional Office.

Data is stored in the UK.

How does the Cheshire and Merseyside SDE work?

Patient data is already used in research, but Secure Data Environments will standardise this process to make it more efficient and to improve data security.

Below are some examples of how data has been used for the benefit of patients and the public in Cheshire and Merseyside.

Fuel poverty dashboard

COVID-19 testing

Events Research Programme (ERP)

People can opt out of their de-identified data being shared for any reason, including between different services.

For more information, read the "How we use your data in Cheshire and Merseyside" leaflet.

Research projects that are being undertaken using the Cheshire and Merseyside Secure Data Environment will be listed here.

Information about completed research projects and their findings will be shared here

Data into Action uses health and social care information to improve services across Cheshire and Merseyside. It is a programme of work which sees our NHS, councils and the University of Liverpool working together to make things better for all 2.6 million people in our region.

When people see a GP, go to hospital, or receive care in a care home, information is recorded to help them receive the best possible care. 

Data into Action uses that data to see what our health and social care services are doing well, where they can improve and how we can make changes.

We want to establish a Patient and Public Advisory Group to ensure that patient and public perspectives are integrated into decision-making processes. We want to make sure patients can learn about, discuss, and impact health data usage in Cheshire and Merseyside. 

Our goal is to ensure meaningful public and patient involvement and collaboration throughout the programme.