Health and care records, when brought together at a regional level, can provide vital information for new research. However, there is a potential conflict between the need for research that benefits the public and the necessity of protecting privacy. Achieving this balance is not easy.
The South West SDE means we can all benefit from research using people’s health and care records while providing strong safeguards that protect data security and privacy. It has the potential to revolutionise health research in the South West of England.
It is being developed by a consortium of partners across the region, including NHS bodies, local authorities, universities and research groups. Our SDE will enable groundbreaking projects, improving the lives of the people in our region and further afield.
Our region
Around 5 million people live in our region, which covers:
- Bristol
- Cornwall
- Devon
- Gloucestershire
- Isles of Scilly
- Somerset
- Wiltshire
We have many research strengths in our region, from health systems research to long-term studies of large groups of people such as Children of the 90s and Exeter 10,000. Our datasets have the potential to support improved health for rural and coastal communities. These specialisms will translate well to the new world of the SDE.
Our governance
The NHS is funding regions in England to set up their own SDEs. There will be 11 regional SDEs across England, with a national one led by NHS England.
The NHS and the Health Research Authority (HRA) have given their official support to the South West SDE, following assessment by HRA’s Confidentiality Advisory Group.
We have a leadership board made up of representatives from across our partners. They oversee the operation of the South West SDE, making sure it’s developed to meet the needs of our region.
We have three public representatives, known as Digital Critical Friends, on our leadership board. They help keep the public’s perspective at the heart of our decision making.
The data controllers in our partnership are represented on a data access committee. This oversees all research projects.
Meet the team
The team behind our SDE is drawn from across our region and partner organisations.
