use MY data

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 data flow from primary care systems, hospital systems and community care into the ICSs? If so, is it identifiable, to enable the data to be linked by the ICS? Does the data go from the ICS into a Secure Data Environment (SDE)? Is this in full or in part, and how identifiable is that data? Is there any other route by which data gets to the SDE? What are the access rules for using SDE data? Are there rules for NHS teams, academics, commercial, other? Who decides on whether access & scope is appropriate? Where does the access get reported? Do all the SDEs feed the Federated Data Platform (FDP)? Does the data then flow to the FDP in full, in part, and how identifiable is it? Is there any other route by which data gets to the FDP? Is the FDP an actual data store? What are the access rules for using FDP data? Are there rules for NHS teams, academics, commercial, other? Who decides on whether access & scope is appropriate? Where does this get reported? Update from NHS England On 02 February 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, 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”. The Executive Group is reviewing the document at present. An update on next steps will be given as soon as possible. Last updated 22 June 2023

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 data flow from primary care systems, hospital systems and community care into the ICSs?
If so, is it identifiable, to enable the data to be linked by the ICS?

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

Is this in full or in part, and how identifiable is that data?
Is there any other route by which data gets to the SDE?

What are the access rules for using SDE data?

Are there rules for NHS teams, academics, commercial, other?
Who decides on whether access & scope is appropriate?
Where does the access get reported?

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

Does the data then flow to the FDP in full, in part, and how identifiable is it?
Is there any other route by which data gets to the FDP?
Is the FDP an actual data store?

What are the access rules for using FDP data?

Are there rules for NHS teams, academics, commercial, other?
Who decides on whether access & scope is appropriate?
Where does this get reported?

Update from NHS England

On 02 February 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, 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”. The Executive Group is reviewing the document at present. An update on next steps will be given as soon as possible.

Last updated 22 June 2023