The responsible use of health and care data is essential for providing individual care, planning services and for developing new medical treatments. Nationally, there is an increased focus on how to improve access to data whilst maintaining the highest standards of security and confidentiality. Secure Data Environments (SDEs) are data storage and access platforms. University or industry researchers will be able to apply to become approved users to access the data in an SDE.
The Thames Valley and Surrey Care Records has been funded to establish an SDE, owned and run by the NHS, covering Buckinghamshire, Berkshire, Oxfordshire, Milton Keynes and Surrey. The aim is to develop data access structures and processes that are trusted, secure and defensible.
The first step in this process has been to invite patients and members of the public, along with health and care staff to help us begin co-designing these structures and processes. The Oxford AHSN hosted two workshops – one in-person and one virtual – to discuss what an SDE would look like, as well as the importance of communication and governance.
Find out more by watching presentations from our workshops:
- Sir Jonathan Montgomery on ethical considerations when using patient data for research
- Non Hill discussing the relevance of an SDE to her son’s complex healthcare needs
This work has only just begun. If you would like to be involved in next steps, please contact firstname.lastname@example.org