Meeting minutes - July 2023

Date: 20 July 2023

Time: 13:00 - 14:30

Venue: MS Teams

Chair: Head of Data Strategy, Joint Digital Policy Unit (Deputising for Louise Greenrod)

Ryan Avison (Deputy for National Data Guardian for Health and Social Care)

Dr Jeannette Dickson (Chair, Academy of Medical Royal Colleges)

Matt Hennessey (Regional System representative, Greater Manchester Health Social Care Partnership)

Louis Holmes (Policy Manager, Care England)

Philippa Lynch (Senior Data Specialist, Local Government Association)

Nicola Perrin (Chief Executive, Association of Medical Research Charities)

Rachel Power (Chief Executive, Patient’s Association)

Head of Data Access and Linking Policy (Joint Digital Policy Unit)

Senior Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Apologies

Dr Nicola Byrne (National Data Guardian for Health and Social Care)

Chris Carrigan (Expert Data Advisor, Use MY Data)

Louise Greenrod (Deputy Director, Data Policy and Digital Oversight, NHS Transformation Directorate)

Actions

8.01: Provide clarity to the group on whether the National Data Opt-Out will apply within FDP (Data Strategy Team)

8.02: Provide written information on latest thinking on the ‘transparency statement’ commitment in Data Saves Lives (Head of Data Strategy)

Item 1: Welcome and introductions

The Head of Data Strategy opened the meeting and welcomed attendees. He then set out the agenda for the meeting.

He welcomed Dr Jeanette Dickson to the NDAG meeting; Dr Dickson is the new Chair of the Academy of Medical Royal Colleges.

Item 2: Actions and Wider update

The action log was shared prior to the meeting. There were no questions from the group regarding previous actions.

Item 3: Briefing on DHSC access to NHS England Secure Data Environment 

Lucy Vickers (Head of Statistics and Data Science, DHSC), Michael Chapman (Director of Research and Clinical Trials, NHS England) and Head of Data Access and Linking Policy (Joint Digital Policy Unit) attended for this item.

The Head of Data Access and Linking Policy provided brief context on DHSC access to the NHS England Secure Data Environment (SDE) and recapped previous presentations on SDE policy to NDAG. He then handed over to Lucy Vickers (LV) and Michael Chapman (MC), the senior leaders for this work, to describe the progress that has been made to date.

LV gave an introduction to the Department’s ambitions for data analysis and key case studies of where data use has had positive and critical outcomes. She then described a high-level timeline to show the movement of DHSC analysts from relying on data sharing/dissemination towards a model of data access by default in SDEs by 2026.

MC reiterated support from NHSE’s perspective for this transition and partnership involved in the work. He emphasised the positive nature of this transition but highlighted that a different approach to output checking would be needed with DHSC in order to fulfil some ministerial and departmental requirements. This model has been worked through with IG and policy teams who are supportive. He asked for advice from this group on how to frame and present to external audiences, and to flag any questions to help clarify approach. He then presented the current NHSE SDE model and the potential changes, as well as the timeline for the project.

Members commented that SDEs had been described as developed for research purposes and asked why the Department would not be using the FDP. MC explained that the change in terminology from “trusted research environment” to “secure data environment” indicated that these platforms had uses beyond research and it was important that DHSC and NHSE should be using the same datasets. LV added that the Department was supportive of using the national SDE as it was a platform ready to use and supported a move to a data access model now. This did not rule out a change to using the FDP in the future, if it was more appropriate.

The Group also asked whether this approach would be extended to other national SDE users. MC said that it may be extended to other users in the future but would require careful thought and there is no plan to do so now.

ACTION: To provide clarity to the group on whether the National Data Opt-Out will apply within the FDP.

Item 4: Feedback from members on the two questions posed in One Year On

The group provided their feedback on the two questions posed in the One Year On blog:

1. We want to know how we can better support you to implement the vision set out in the data strategy.
2. We’re also interested in whether there is anything else, that isn’t covered in the strategy, that you think would be helpful in achieving this vision.

Much of the feedback was focused on the importance of building and maintaining public trust and confidence, both in terms of delivering the engagement-focused commitments in the Strategy and embedding strong public and patient engagement throughout the large programmes that are underway.

Many members were concerned about the upcoming announcement of the contract award for the FDP and what that could mean for opt-outs and public trust in how we use their data. Strong and simple comms was seen as a good way of managing the risks, to help people better understand how the system works currently and how it’s changing.

Another key piece of advice was to focus on what members of the public already expect in terms of how their data is used and what services are available (e.g. the different use cases), and to really deliver on those, rather than focussing too on ‘fringe interests’ of small groups of stakeholders who focus on a narrow set of risks. Making the best use of the data available – in a way that the public want / expect – was seen as a good way of countering some of the criticisms that are levelled against NHSE and DHSC.

From a social care point of view, the advice was to think about the links with Care Data Matters, and how the two documents complement each other. The group noted that it was sometimes difficult for providers to make sense of different steers and sets of guidance / policy advice. Simplification was key.

Item 5: Public Engagement

The Head of Data Access and Linking Policy presented on plans for public engagement and referred back to the previous NDAG update on this topic. He discussed the current position and confirmed funding had been confirmed for embarking on procurement process to procure one supplier until the end of the 2024/25 financial year.

A good amount of progress has been achieved on the data pact, which Rachel summarised for the group. She thanked individuals for their hard work on this. The Head of Data Access and Linking Policy presented the estimated timeline for the current procurement timeline projections.

There were no questions from the group.

Item 6: Data Strategy: Commitment Delivery Update

Senior Policy Advisor (Data Strategy Team) provided a brief update on the current progress in implementing the Data Saves Lives strategy commitments. There were no questions from attendees. It was agreed to share details of latest thinking on the transparency statement commitment via email, along with the minutes.

Action: Provide written information on latest thinking on the ‘transparency statement’ commitment in Data Saves Lives

Item 7: AOB and CLOSE

The Head of Data Strategy explained that NDAG was approaching its one-year anniversary, and the team wanted to reflect on how we could best use these sessions going forward. The Data Strategy Team would arrange calls with members over the summer to ask gather feedback and present it back at the next meeting for discussion.

The next meeting would be held on 5th Sept at 1000-1130, theme TBC