How our SDE will work
We have from the onset, and will continue to work closely with patients, public and healthcare professionals within the TVS area on the design of our SDE. We will work with the Five Safes Framework.
This image was co created with our patient, public and health care professionals, Understanding our Data Community of Practice (CoP – see get involved) to show the data journey for research and planning within the secure data environment. It is explained in more detail below.
Safe People
We are developing an approved researcher scheme to ensure that the people that access the SDE data, meet the standards that we co-design with our community of practice.
Safe Projects
We are codesigning the criteria and processes that will be used to approve projects and allow researchers to access the SDE data.
Safe data and safe settings
Safe data
Patient data will come into the SDE from healthcare organisations from across the Thames Valley and Surrey. When it enters the initial ‘processing environment’ it is checked and de-identified. Minimised extracts of de-identified data are produced for analysis within the ‘trusted research environment.
Safe settings
The data are kept safe in the SDE, researchers are not given a copy to take away. Researchers can analyse the de-identified data within the ‘trusted research environment’, they cannot download it. How the data are used will be monitored.
Safe outputs
We are co-designing our value strategy to help ensure that the planned outputs create value for patients, the public and the NHS (see Get Involved).
Metadata
Metadata is data that describes other data. To fully understand the meaning of data, first we need to know some further information about its context, known as metadata. It is important to be able to trust where and who the data comes from and how it relates to other data. The TVS SDE uses a metadata catalogue called the Mauro Data Mapper. The Mauro Data Mapper allows approved users to read descriptions of the kinds of data that can be made available for analysis, it does not show the data itself.
This video from the NIHR HIC describes what a metadata catalogue is in more detail.
