Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

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NHS COVID-19 Data Store - Access and Release Register

We worked to ensure the publication of a Register of Access and Release from the NHS Covid-19 Data Store

 

Background

In September 2020 use MY data hosted a webinar, The COVID-19 exit strategy - what next for patient data?  An outcome of the event was a call from delegates for more transparency around the uses of the NHS COVID-19 Data Store.

The Data Store was built by the US Company Palantir, commissioned by NHSX and is now being managed by NHS England and Improvement (NHSE/I).  It is a key resource in the response to the pandemic.

The NHSE/I website already included information on what data was actually in the NHS COVID-19 Data Store (you can see this here) and we learned that NHSE/I had an ambition to publish the list of releases, but the timelines had not yet been worked out.

The Register was published on 12 August and is available on NHS England and NHS Improvement’s website - https://www.england.nhs.uk/ourwork/tsd/data-info/  The Register will be updated monthly.

The summary of the webinar, including the recording, is available here.

 

 What we did

use MY data wrote to NHSX and NHSE/I in October 2020 highlighting the need for transparency and offering to bring the patient voice to assist in the scoping, development and publication of a register.  We also informed our webinar delegates and our Membership that we had taken this action.

During December 2020 and January 2021, use MY data worked with key members of NHS England and NHS Improvement to help them scope and design the release register.  In late January 2021, the first draft versions of a register of data releases were shared with use MY data’s Advisory Group, along with a corresponding data access register due to be reviewed in February.  NHSE/I planned to publish both of these documents in the Spring. 

use MY data has had regular update meetings with the NHSE/I team and had sight of early versions of the formats for a draft register, including an outline of the workflow processes, which we saw in February 2021.  We returned comments to the NHSE/I team.

Since then we have been having regular catch-ups, to try to maintain the momentum.  Health Data Research (HDR UK) organised a workshop to look at commonalities of existing data release registers, which included a wide range of data controlling bodies.  use MY data requested that the NHSE/I team were included in the workshop, as a step towards consistency across registers.

We have also been in communication with National Data Guardian’s Office about this work.

 

Progress updates

An update from NHSE/I in April 2021 indicated that they were still in the process of developing the fields in the data release register.  "We’ve been working with the developers of the Data Platform, to ensure we’re capturing the right information and to make it easier to download a report as we move into BAU [business as usual]. We’re aiming to have completed this process in the next few weeks.”

In June 2021, given the significant time since the need for a register was identified (September 2020), use MY data wrote formally to the team at NHSE/I, asking for a firm commitment on the release date.

We wrote again to NHSE/I on 21 July 2021 requesting a publication date.  The letter is available here.  The response from NHSE/I which we received on 11 August is available here.

The Register was published on 12 August and is available on NHS England and NHS Improvement’s website - https://www.england.nhs.uk/ourwork/tsd/data-info/ 

We were told by NHS England & Improvement that the Register would be updated monthly.  On 10 November 2021 we wrote to NHS England & Improvement noting that the latest version of the Register was still dated 12 August 2021, asking about the plans for publication, noting that the end-dates for most of the releases has passed. On 26 November NHS England and Improvement emailed us to say:

"We are currently reviewing the timing for updating the register as the requirement to disseminate vaccination data has diminished somewhat with the high level flows now in place.  Since August, until the end of October, there haven’t been any new disseminations and therefore there are actually only now 2 additional flows to add.  Our schedule is likely to be quarterly or as and when new flows are added.  The updated register has however been published today - https://www.england.nhs.uk/publication/data-dissemination-register/"

"NHSE/I does not routinely disseminate data in the same way which NHS Digital is set up to do.  The requirement for NHSE/I is that we use the data for our purposes in order to meet our statutory duties.  Access to Covid19 data is largely restricted to NHSE/I analysts who may be working nationally or regionally.  Analysts cannot extract the data unless they make a specific request to do so and it can be justified to support a clear business purpose.  For instance, one analyst was tasked with pulling together figures for No. 10 on vaccine uptake etc and needed to extract the data because of the limitations within Foundry on how many rows of data could be displayed at once.  The NHSE/I analyst was permitted to extract the data she needed so that she could create the tables necessary to create calculations, the figures from which were then provided to No.10 in a report.    There are some external organisations (i.e pharmacies) with access to non personal data within foundry, such as supply chain information, vaccine stock, PPE.  Pharmacies and other orgs use it to order and manage supplies."

"NHSE/I are being transparent about the Covid information which is available to us and which is shared as this is set out in our DPIA for the Covid19 Data Store (currently under review and update) and the NIMS DPIA which is updated regularly and where there are clear disseminations of personal data, they are added to the register."

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