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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:

  • AI Multiply – a project which is using artificial intelligence (AI) techniques look at clusters of disease to better understand the connections between these diseases and the outcomes for patients. It is accessing data from GP practices in Newcastle.
  • SPIDeRR – is a consortium who want to understand more about early rheumatic disease – a group of conditions which cause pain and inflammation. Access to data will help them spot similar symptoms and patterns and take a range of other factors into account to help find ways of diagnosing people sooner.
  • Managing long term conditions in disadvantaged communities - New cancer treatments such as targeted therapies and immunotherapies are improving survival rates but there’s evidence to suggest that people living in deprived communities are less likely to receive these. This study is looking at who is offered these targeted treatments and whether there is health inequality.


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.

Benefits of the SDE

  • Improved public confidence and transparency as we will publish and share who access data and for what purpose
  • Faster time to turn around research and development projects
  • Improved and shared analytical knowledge across the region
  • Improved retention of highly sought-after technical and analytical staff
  • Improved and shared analytical knowledge across the region
  • Reduction in costs for resources (staff, technical infrastructure, software licences)

Possible benefits to the healthcare system from SDE projects:

  • Improved patient outcomes
  • Reduction in health inequalities
  • Improved safety
  • Earlier detection and treatment for patients
  • Reduction in legal costs
  • Reduction in litigation risk
  • Reduction in data breaches
  • Improved patient recruitment numbers for projects
  • More relevant patient selection for research projects
  • Reduced time to recruit patients for research projects

An Introduction to the Secure Data Environment webinar

We hosted two webinars which offered delegates an introduction to the Secure Data Environment and the progress we have made in the North East and North Cumbria. You can view a recording of the webinar, or catch up on the questions and answers raised.

Introduction to the North East and North Cumbria Secure Data Environment: Webinar recording

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