Meeting minutes - May 2023

Date: 3 May 2023

Time: 10:30 - 12:00

Venue: MS Teams

Chair: Louise Greenrod (Deputy Director - Data Policy and Digital Oversight Joint Digital Policy Unit)

Maya Anaokar (Patient’s Association)

Ryan Avison (Head of the National Data Guardian’s Office)

Dr Nicola Byrne  (National Data Guardian)

Chris Carrigan (Expert Data Advisor, Use MY Data)

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)

Linn Philips (NHS Patient and Public Voice Partner)

Rachel Power (Chief Executive, Patient’s Association)

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

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

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

Communications Manager (NHS Transformation Directorate, NHS England)

Apologies

Marc Farr (Regional system rep, East Kent Hospitals University NHS Foundation Trust)

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

Helen-Stokes Lampard Chair of Academy of Medical Royal Colleges (AoMRC)

Actions

6.01: Senior Policy Advisor discussion with Matt H on CAG approvals and local opt-outs.  (Senior Policy Advisor)

6.02: Communications Manager to clarify access plans for PR campaign resources, especially the use of a logo. (Communications Manager)

6.03: Members to share any further thoughts or comments on our initial thinking around how to progress work on opt-outs to Senior Policy Advisor (Members)

Item 1: Welcome and introductions

Louise Greenrod (LG) opened the meeting and welcomed attendees.

Item 2: Actions and Wider update

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

Item 3: Evaluation of the Data Strategy 

The Head of Data Access and Linking Policy presented on Data Access Policy, updating members on work implementing the Data Strategy commitments to move to Secure Data Environments (SDEs) by default. The work vision was outlined – to move from the current ‘Data Sharing’ model to a ‘Data Access’ model – recapped progress to date and updated on key next steps, including:

• Approach to oversight – good progress has been made.
• Have engaged with the sector and come to the agreed approach, to expand existing UKSA platform accreditation process to include SDEs providing access to NHS data for research. This is a highly regarded and robust service and already accredits platforms that host health data for research purpose.
• Upcoming policy statement – sets out key policy decisions that have been made to date and aims to reassure the public and set clear expectations/create certainty for data controllers, data accessors and platform providers.
• Ambition to take a proactive approach to update on development of policy thinking and/or decisions, through publishing this policy statement in draft to stimulate testing and feedback.

Discussion focussed on two main themes. Firstly – the importance of clarity, in terms of implementation direction and supporting policy/guidance (including which use-cases are/aren’t within scope of the guidance available to the system). And secondly – the need to ensure that the public and patient voice is considered, including the potential for work on the data pact to inform best approaches.

Additionally, members were supportive of the direction to utilise the existing UKSA framework for accreditation but raised questions around the language used in messaging (oversight vs accreditation).

Some specific questions were taken in the meeting chat:

• As we were moving to data access as the default, rather than data release, how did this impact commercial companies who relied on data releases. The move to data access by default would cover commercial users of the data too. This would be a shift for many and we recognised they may face barriers or challenges. These challenges needed to be reflected in how we set any "cut-off" for data sharing.
• Would charities be able to get data access? Yes, the British Heart Foundation and other charities already used the existing National SDE - https://digital.nhs.uk/services/secure-data-environment-service
• Would the infrastructure allow a user to bring their own data to work on inside the SDE, alongside existing SDE data? This was the goal – see NHS England’s national site for more details https://digital.nhs.uk/services/secure-data-environment-service#bring-your-own-data
• Would exiting costs (for data release) be increased (for data access)? There was a lot of work internally to developing models for costing access to data access to ensure a sustainable service can be provided.

Item 4: Monitoring Public Trust

Senior Policy Advisor (Data Policy Team) presented, updating the group on our early thinking about how we can improve opt-outs short and long term, briefly:

• In the short term, making them simpler and clearer - digitising, improving information available and public engagement – and
• In the longer term, reviewing the process to address systemic problems, considering options such as separating planning and research, and making it easier to opt back in for Type 1s.

It was noted that engagement is key to this work - with NDAG, other stakeholders and the public - particularly when it comes to the longer-term future of opt-outs.

Discussion focussed on established existing complexities – including local opt-outs, whether there were trade offs or a separation between simplifying and clarifying and if this was a helpful way to look at the issue. Some members felt that simplification might not be the most useful framing for our approach and suggested a more open framing could be more suitable. Members discussed the importance of ensuring an authentic opt-out – one that is based on a properly informed decision and does what people expect it to do – and the need to ensure opt-outs remain fit for purpose and work with future technical and operational reality.

The need for an ‘authentic’ opt-out was linked to the issue of lack of public understanding of the opt-out, in particular the numerous exemptions which apply. Improving our understanding of public expectations will be a key objective of public engagement around the opt-out and will also tie in with wider comms and engagement work ongoing and planned (including the planned ambient PR campaign, which looks to build confidence in how the NHS uses data).

Action 6.01: Senior Policy Advisor (Data Policy Team) to arrange discussion with Matt H on CAG approvals and local opt-outs.

Action 6.02: Communications Manager (NHS Transformation Directorate) to clarify access plans for PR campaign resources, especially the use of a logo.

Action 6.03: Members to share any further thoughts or comments on our initial thinking around how to progress work on opt-outs to Senior Policy Advisor (Data Policy Team).

Item 5: Commitment and Delivery Update

Senior Policy Advisor (Data Strategy Team) provided an update on the current implementation of Data Saves Lives strategy commitments – focussing on three keys areas: the overall picture and progress made, upcoming commitments, and most at-risk (red-rated) commitments.

As of the end of March this year, 50% of commitments had been completed. However, there had been some green commitments slipping into amber/red as coming into difficulty. Of the remaining, 13 commitments were on track (marked green) to be delivered by the dates published within the strategy, 25 commitments were subject to minor delays (marked amber) and 13 were facing significant delays and/or issues, including funding (marked red).

The Senior Policy Advisor gave an overview of the most common challenges reported for red-rated commitments: resourcing issues, budgetary issues, other clearance issues, and policy problems (e.g interrelation with other policy work).

There were no questions from the group. Members were asked to please let us know if would like discussion/focus on anything commitments or groups of commitments in particular at future meetings.

Item 6: AOB and CLOSE

LG noted that, as we are coming up to a year of NDAG meetings, this summer (July) we would like to get reflections on the meeting, how it is working and any changes we might like to make going forward – with the intention to conduct a review and test ideas in August.

The next meeting would be held on 13 June 2023, focused on adult social care.