Seeking Members' views on NHS England Statutory Guidance

NHS England & NHS digital merger

Please send your feedback to responses@usemydata.org.uk by 12:00 on Thursday, 23 February.

Members’ views are needed on new Draft guidance on NHS England’s protection of patient data. Published by the Department of Health & Social Care, in relation to NHS Digital moving into NHS England (NHSE), this is significant guidance, marked as ‘Statutory’ but published as draft.  Our Expert Data Adviser, Chris, contacted NHS England seeking clarity about the guidance’s status and was advised that, while NHSE is not hosting a public consultation, use MY data would be welcome to send feedback.   

Key sections relating to transparency around patient data:

Governance… & Transparency… - Much of the guidance is about moving NHS Digital’s work into NHSE, so describes business as usual.  However, the Governance and Transparency sections detail how, as a single merged organisation, NHSE could be in the position of instructing itself. Oversight will be crucial.  The Governance section highlights NHSE’s Board and role of Non-Executive Directors to provide “an independent view on the effectiveness of safeguards and delivery”. 

use MY data’s Executive Group has proposed that the Board could have a Non-Executive Director for Patient Data.  This would aid transparency, patient representation, governance and show that NHSE is working in the best, most appropriate way for patients.  The Secretariat will take this proposal to NHSE.

Independent advice section – This references the new Advisory Group for Data, which replaces the Independent Group Advising on the Release of Data (IGARD). ‘Independent’ has been removed from the title, as the new group includes NHS England officials.  While the guidance emphasises the Group’s independence, it does not provide specific information about the processes and procedures that would mandate independence and transparency. 

Procedures for internal access to data – Oversight of internal access relies on the Advisory Group for Data. There is the potential risk that NHSE could approve itself for wide access and there is the potential benefit that access could be more straightforward.  Transparency will be crucial.

There have been two recent related publications on the impact of the merger, focusing on transparency about patient data.

National Data Guardian

Dr Nicola Byrne, National Data Guardian (NDG) for Health and Social Care in England has called for more clarity from NHS England on how it will ensure there are “as strong… if not stronger” safeguards on health and care data following its takeover of NHS Digital.  In an interview with the Health Service Journal (HSJ), Nicola noted that there is “an inherent tension in having one organisation be both data custodian and the organisation seeking to access the data”, although also noting that it “makes sense in terms of streamlining and efficiencies”.

The interview was published on 08 February here.  Regrettably, this is only available to HSJ subscribers.

Independent Group Advising on the Release of Data (IGARD)

IGARD’s Closure report: a record of activities and impact 2017-2023 details some of the benefits of having independent oversight of data dissemination and some of the challenges for NHS England going forward.

Highlighting some key aspects of the report:

• “New and emerging innovations in technology are expanding the possible uses and insights that can be drawn from data. This brings exciting potential benefits but can make the task of transparency more challenging as it may be more difficult to explain to the public how data is being used.”
• “IGARD anticipates that it will be challenging in the midst of the merger for NHS England to work to reduce the data dissemination timescales while also ensuring appropriate governance is maintained.”
• Writing about the benefits of having an independent group overseeing data released following a ‘precedent’ process, IGARD noted that “between March 2020 and December 2022, IGARD reviewed 191 applications that had been down the Precedent route, around 15 per cent of all the applications that had progressed down this route. Of these, IGARD judged that in more than one in four instances, the Precedent had not been applied correctly (52 out of 191 applications reviewed) and in 85 per cent of applications, significant issues were reported by IGARD reviewers”.
• “IGARD members, secretariat staff and the IGARD Chair have provided advice on the drafting of the terms of reference for the new group, however, whether or not the drafting suggestions are accepted, as well as the group’s membership, scope and role will be a matter for NHS England’s board to determine”.

The report was published on 31 January and is available here.

A related note on IGARD, NHS England and transparency about the statutory guidance

IGARD’s final set of minutes, from the 26 January meeting, noted the following:

• “IGARD noted that a response from the Department of Health and Social Care, published by the House of Lords Secondary Legislation Scrutiny Committee on 19th January 2023, stated that the draft statutory guidance (guidance to NHS England on the measures it should take to protect confidential information when exercising the data functions transferred from NHS Digital) had been shared with IGARD for their views. Members judged that this was not an accurate reflection of IGARD’s involvement, since the group had only received a draft of the guidance to review on 18th January 2023 and had been given just two days to respond with comments. IGARD were concerned by the impression that had been given to the House of Lords Committee that IGARD had been adequately involved, as members felt they had been given limited opportunity to comment and could have made a more meaningful contribution had they been involved earlier in the drafting process”.