22 May 2024
The Secure Data Environment (SDE) for the Great Western region is now one step closer to becoming a reality. Plans for the Great Western SDE have received important ethics and confidentiality approval.
The Health Research Authority’s Confidentiality Advisory Group (CAG) provides expert advice on using confidential patient information. Their Research Ethics Committee (REC) protects the rights, safety, dignity and wellbeing of research participants. Both have approved the Great Western SDE to continue to the next phase of development.
Secure Data Environments are secure platforms for analysing data for research. They give approved researchers secure access to routinely collected data. Data comes from the NHS and local government. SDEs allow researchers to carry out approved research projects.
NHS England has asked all regions to set up their own local SDEs. Local SDEs will go through an accreditation process. This ensures they meet the highest technical and security standards.
The teams developing SDEs must seek CAG approval because SDEs use confidential data. Applicants must prove the quality of their plans for confidentiality and that data use is in the public interest. They must also demonstrate they have high quality plans for involving and engaging the public. The Great Western SDE has shown that its plans meet these stringent tests.
These approvals demonstrate Great Western SDE’s commitment to these standards. This important milestone brings the region closer to developing an SDE to safely conduct research, benefitting the local population.
Great Western SDE team will now work closely with members of the public and local partners. Together they will robustly develop and test the SDE over the next 12 months before it goes live.
Routinely collected information in the SDE includes:
All patient information in the SDE is depersonalised. Identifying personal information is replaced with ‘dummy’ information before a researcher accesses it. This includes names, addresses or NHS numbers.
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.
SDEs will provide clearer routes to access data appropriately. This will make it easier for research to take place. It will enable new kinds of research to improve health and care.
Dr Charlie Kenward, Research Clinical Lead at Bristol, North Somerset and South Gloucestershire Integrated Care Board (BNSSG ICB) and a local Bristol GP, leads the project. He said:
“Passing this significant milestone is a big achievement for our project. It has only been possible thanks to the hard work and high level of dedication of our team over the last six months.
“It has given us confidence in our approach, and has added to our motivation to deliver the SDE for the benefit of the public in the South West. I would like to put on record my thanks to everyone has worked so hard this, including our public contributors.”
The Great Western SDE is fortunate to benefit from Digital Critical Friends. These are members of the public trained in digital and data approaches in healthcare. This gives them the confidence and expertise to give their perspectives on SDE plans.
Digital Critical Friends are members of the Great Western SDE’s management and leadership boards. They make decisions alongside health, social care and academic colleagues. They have been key in the development of the CAG and ethics applications.
Amanda Threlfall, Digital Critical Friend, said:
“As a public participant and Digital Critical Friend it’s great to be working with the Great Western SDE team, and know that we can ask questions or raise concerns. They are very inclusive and it creates a good working environment with positive outcomes. The team operates transparently, which gives us reassurance that the project is being managed in an ethical manner, and we are given equal opportunity to share our perspectives.”
To find out more about the SDE and get involved, visit the project page or email bnssg.gwsde@nhs.net.