Secure Data Environment for the North East and North Cumbria

The North East and North Cumbria (NENC) is one of 11 regions to receive funds from NHS England to create a Secure Data Environment (SDE). The programme is funded until March 2025.

Challenges in accessing data for research and improvement

Accessing health and care data for research and analysis can be time-consuming and burdensome. The Goldacre Review and the Data Saves Lives strategy proposed the set-up of SDEs as a more secure and efficient way to access data. This has now become Department of Health and Social Care policy as we shift from a data sharing to data access model.

Improved data access and security

SDEs will become the default way to access health and care data for research and analysis purposes.

This is safer as instead of multiple copies of data being made available to researchers and analysts, they are given access to a secure place where they can access the data for their specific purpose.

Access to the data is tightly controlled and record level data cannot be removed.

SDEs provide better control and security by bringing researchers and analysts to the data, rather than distributing copies of that data.

Data Access Committee

A North East and North Cumbria Data Access Committee will oversee and approve requests to access the SDE. The committee will include representatives from the public, data privacy officers, data controllers, research and ethics specialists. They will ensure any projects who wish to access data meet the strict requirements both legally and ethically.

SDE test projects

We have a platform which is provided by NECS – who handle health and care data for commissioning and population health purposes on behalf of our region. This is compliant with the security standards set out by NHS England.

We are working with several test projects who will be accessing data from different providers to test the technical infrastructure. They include:

• Newcastle Patient Safety Research Collaboration is carrying out several projects with the Secure Data Environment.
  • One is mapping data to understand more about the care needs of older people who have recently been in hospital
  • Whether patients in deprived communities are less likely to receive innovative cancer treatments such as immunotherapy.
  • They are developing an artificial intelligence (AI) system to identify high risk glaucoma patients to ensure they are followed up and scheduled appropriately.
  • One project is assessing whether using digital photography and AI can improve waiting times for skin cancer patients.
  • One study is looking to find out the impact on patients when they are on five or more medications.
• ADMISSion: This project is using healthcare data to see how people with more than one long term condition (such as diabetes or Parkinson's disease) can often end up having longer hospital stays than people without.
• AI Multiply: Is using AI to identify and prevent people from having more than one long term health condition. It is linking the healthcare data with other sources to understand the wider picture.

How we are working with the public

We have an extensive public and patient involvement strategy. We have recruited 14 public members who work with us on the programme. They help us to shape our decision making and thinking and are included in our strategic and decision-making groups.

We are building on work that was done with the public in the North East and North Cumbria as part of the Great North Care Record programme. We will engage and involve the public to develop the terms and the principles over who we share data with.

Email the team to find out more about our work on the Secure Data Environment programme.