Bringing clarity to national patient data activity in England

Our work to make planned uses of patient data easier to understand


Following several national programmes, priorities and policies in England relating to the uses of patient data both for direct care and for other uses, our Members have highlighted a range of questions which they feel should be answered for patients and the public, to bring a greater understanding and transparency.  

As our Members hear more about the development of Trusted Research Environments (TREs), Secure Data Environments (SDEs), Integrated Care Systems (ICSs) and the Federated Data Platform (FDP), we see the need for a collective understanding of how these operate and interoperate and the need to share the answers with our Members online. 

The questions which have been highlighted by our Members and which we have forwarded to NHS England are shown below.  

What are the types and nature of the intended data flows into the Integrated Care System (ICS)?

Does the data go from the ICS into a Secure Data Environment (SDE)?

What are the access rules for using SDE data?

Do all the SDEs feed the Federated Data Platform (FDP)?

What are the access rules for using FDP data?


Update from NHS England

On 02 February 2023 NHS England sent a draft document to the Secretariat for initial review, following which the Secretariat met with members of NHS England on 08 February, to discuss best next steps. 

The Executive Group reviewed the document and the Secretariat has collated their views and provided feedback to NHS England.  We will now be exploring the opportunity with NHS England for a wider review workshop with Members.

On 14 June 2023, NHSE sent the latest draft document, in the form of a Public data narrative, for the Executive Group’s confidential review.  While this does not address all of our questions, NHSE hopes it will “be a useful document to members of the public who might be interested in the changes we are making to the way we use and access data”.  

Last updated 22 June 2023


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