By Dr Paul Mills, HRA Confidentiality Advice Service Manager
Through my role supporting and advising the Confidentiality Advisory Group (CAG), I've been closely involved in one of the most significant developments in the use of health data for research in England, the creation of the NHS Research Secure Data Environment (SDE) Network.
Now, with all regional SDEs in place across England and continuing to mature, we've reached an important milestone. It's a significant achievement for researchers, NHS organisations and patients alike, and one that reflects years of collaboration between the NHS, regulators, researchers and public contributors.
At its heart, the SDE Network is about striking the right balance. Enabling high-quality research while maintaining public trust and ensuring confidential patient information remains securely within NHS control, while still being made safely accessible for approved research purposes.
The HRA, including the CAG, has a key role to play to make sure that SDEs do strike that balance as we seek to make it easier to do research that people can trust.
What is a Secure Data Environment?
SDEs were developed as part of the Department of Health and Social Care's vision for improving access to health data for research and innovation.
Historically, patient data was often shared with a range of organisations and databases to support research. While this enabled important scientific advances, it also created challenges around oversight, governance and public confidence.
SDEs take a fundamentally different approach.
Rather than data being shared out to researchers, researchers access the data they have been approved to use for their studies within a highly secure NHS-controlled environment. Data remains protected, identifiable information is safeguarded, and by default, researchers only access information in a form that does not enable individuals to be identified. Research data approved to leave the environment is subject to appropriate output controls.
A simple way to think about it is this, researchers go to the data, rather than the data going to researchers.
This model helps ensure that valuable health data can continue to support research and innovation while remaining under secure NHS oversight.
Building a network across England
Alongside the national NHS England SDE, regional SDEs have been established across England providing the capability to bring together data from hospitals, GP practices and other healthcare settings within defined geographical areas.
By enabling data from different settings to be linked securely, these environments help create a more complete picture of patient care. For example, data from a GP record can be securely linked with hospital data, enabling researchers to better understand patient journeys, treatment outcomes and population health trends.
Excerpt from the official page. The original is authoritative. Continue reading at UK Health Research Authority ↗