East of England Secure Data Environment

In response to the critical need for advancing health and care research, we are collaborating with a variety of partners across the East of England on an NHS project to establish a Secure Data Environment. This initiative is driven by the goal of facilitating the safe, secure, and ethical use of NHS patient data. By doing so, we aim to unlock new possibilities for vital health and care research, ultimately improving patient outcomes and fostering innovation within the NHS.

Currently, anonymised NHS data is sent to approved researchers who hold and manage this data. A Secure Data Environment includes digital spaces to hold NHS data and allow approved researchers to safely access and analyse it for research, while keeping the data protected and under the control of the NHS. The East of England Secure Data Environment is funded through an NHS England programme, and is part of a network of regional secure data environments across England.

How a Secure Data Environment works

The following steps:

  1. Application: A researcher applies for permission to use the Secure Data Environment.
  2. Approval: A committee decides whether the researcher is safe, and the project has the potential to improve public health.
  3. Data selection: Organisations which have agreed to contribute patient data share a copy of data for that specific research project with the Secure Data Environment.
  4. Data ‘scrubbing’: Identifiable information (like names and addresses) is automatically removed before any data is visible to researchers.
  5. Data accessed: Approved researchers gain access only to the specific data they need.
  6. Analysis: The researcher does statistical analyses of the data.
  7. Results: Only an anonymous summary of the results can be exported from the Secure Data Environment.
  8. Data deletion: Upon study completion, all project data is securely erased from the Secure Data Environment.

Why a Secure Data Environment is important

Many organisations across our region, including hospitals, GP practices, and Integrated Care Systems, hold valuable data. This data has the potential to significantly contribute to health research and drive data-led improvements in health and care.

The initial funding for our programme targets specific example projects, such as research on cardiovascular disease (CVD). These projects aim to demonstrate how data from various organisations can be securely, transparently, and efficiently combined. By doing so, we support research that addresses NHS priorities across the region. Following these example projects, the Secure Data Environment will be scaled up to support wider research.

Public involvement

The data in the East of England Secure Data Environment ultimately comes from NHS patients across the region, and they will be an essential part of its design, decisions about who will be allowed to access data and for what purpose. This project builds on public involvement in earlier projects (such as MyCareRecord, Gut Reaction, and CYNAPSE) and brings together many organisations that are working to support trustworthy use of data in health research.

You can choose whether or not your data is used for research and planning. If you do not wish your de-identified data to be used to support local research through the East of England Secure Data Environment, please visit https://www.nhs.uk/using-the-nhs/about-the-nhs/opt-out-of-sharing-your-health-records/.

Organisations involved in the East of England Secure Data Environment  

This project brings together organisations across the region that use or hold NHS patient data, provide technical expertise in data science and innovation, and who work with patients and members of the public. The organisations partnering to deliver this project include:

  • Cambridge University Hospitals NHS Foundation Trust
  • Cambridge University Health Partners (CUHP)
  • Health Innovation East (formerly Eastern Academic Health Science Network)
  • Healthwatch
  • Norfolk and Waveney Integrated Care System (ICS)
  • Cambridgeshire and Peterborough ICS
  • Suffolk and North-East Essex ICS
  • Bedfordshire, Luton, and Milton Keynes ICS
  • Hertfordshire and West Essex ICS
  • Mid and South Essex ICS
  • The University of East Anglia
  • Anglia Ruskin University
  • University of Cambridge

Find out more and get involved

You can read more about what the East of England Secure Data Environment programme will do, and how you can get involved, here: https://www.eoe-securedataenvironment.nhs.uk/

There will be a webinar and in-person events to hear more from local communities about the programme in Spring 2024. If you want to hear about these, you can sign up to the mailing list, or join a wait list to hear about opportunities to get involved, by following the link above.

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