Great Western Secure Data Environment

Secure Data Environments (SDEs) are online platforms for analysing health and social care data for research. They aim to improve the safety of the use of data in research.

NHS England is supporting regions to set up their own local SDEs.

SDEs give approved researchers secure access to routinely collected NHS and local authority data. Access is only allowed with the permission of these organisations.

Data in SDEs can include things like:

• Illnesses and conditions
• Treatment and care
• Medical imaging such as X-rays
• Test results
• Medicines and allergies
• Hospital appointments and admissions
• Social care activity

Identifiable information will be depersonalised. Identifying personal information is replaced with ‘dummy’ information before a researcher accesses it. This includes names, addresses or NHS numbers.

Results from analyses of SDE data are independently checked. This protects privacy and ensures results don’t contain information that could be used to identify people.

This SDE approach means data isn’t sent or used for any purpose other than the approved research. This approach has already been tested for several years. SDEs take it to a larger, regional scale.

The benefits of the SDE approach include:

• Security and peace of mind. SDEs are developed to the highest security standards. Only approved researchers, working on pre-approved projects, will be able to access the data.
• Speeding up the research process. The SDE will make data-sharing processes more efficient. Researchers will be able to access data in one place. They won’t have to ask lots of organisations for permission or set up separate data sharing agreements. This will speed up research, bringing new treatments and approaches into practice more quickly.
• Tackling health and care inequalities. SDEs pool routinely collected data from GPs and other health and care services. This means that information for most of the population will be included. This in turn means that researchers can study needs and outcomes for groups of people traditionally excluded from research.
• Enabling more researchers to help solve problems in health and social care. Through improving support, processes and technology, more research can be undertaken. Examples include understanding demand for emergency or social care, or it might be on the effectiveness of treatments or developing new clinical risk scores.

Eventually, regional SDEs will link together as part of a national network. This will allow research across regional boundaries or the whole country. Each local data controller will still have control of where data is used.

Project aims

The Great Western Secure Data Environment covers:

• Bristol, North Somerset and South Gloucestershire
• Cornwall and the Isles of Scilly
• Devon
• Gloucestershire
• Somerset
• Bath and North East Somerset, Swindon and Wiltshire
• The South Western Ambulance Service area which also includes Dorset

Partners from across the region include:

• NHS organisations: hospital trusts, mental health trusts and GP surgeries, represented by Integrated Care Boards
• Local authorities
• Our local universities
• National Institute for Health and Care Research (NIHR) groups like the Applied Research Collaborations (ARCs) and Biomedical Research Centres (BRCs)
• Health Innovation Networks
• NHS England – South West
• Our neighbouring SDE projects in the South of England

We are also working closely with members of the public. Digital Critical Friends are members of the public members trained in digital and data approaches in healthcare. This gives them the confidence and expertise to give their perspectives on SDE plans.

Three Digital Critical Friends sit on the Great Western SDE management and leadership board. They help ensure it is fit for purpose and is in the public interest.

Hosted by NHS Bristol, North Somerset and South Gloucestershire Integrated Care Board (BNSSG ICB), the Great Western SDE is co-led by the partners. Together we are developing the Great Western SDE and rolling it out across the region.

In the Bristol BRC we are supporting the development of the SDE through the following projects:

• TDS009 Supporting data access in partner organisations. One of our researchers will support partner organisations in understanding and implementing information governance requirements and processes necessary for the Great Western SDE to function. Information governance is a framework that helps organisations manage confidential and sensitive patient data in a secure, legal and effective way. The researcher working in this role will manage information governance-related activities, make applications to data governance committees, develop documentation and provide support for the BNSSG ICB.
• TDS011 Developing and testing an early version of the SDE. We will conduct a small number of projects to test how data stored within the SDE can be accessed and analysed. This will help us test the design and functionality of the SDE before it is rolled out across all partner organisations.

What we hope to achieve

The Great Western SDE will be a secure, robust way of accessing NHS and local authority information. It has the potential to enable so much new research. It should also reduce the time involved in setting up studies and getting access to data.

We want citizens in the Great Western area to know about the SDE, understand its value and see the benefit of having their data included in it. To this end we are continuing our programme of public engagement workshops and developing a public website.