Meeting minutes - February 2023

Date: 9 February 2023

Time: 15:30 - 17:00

Venue: MS Teams

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

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

Chris Carrigan (Expert Data Advisor, Use MY Data)

Matt Hennessey (Regional system representative, Greater Manchester Health and 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)

Linn Philips (NHS Patient and Public Voice Partner)

Rachel Power (Chief Executive, Patient’s Association)

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

Amy Darlington (Executive Director, Imperial College Health Partners)

Chris Russell (Programme Director: Data for R&D, NHS Transformation Directorate)

Deputy Head of Data Communications (NHS England)

Head of Communications for GP Data for Planning and Research (NHS Digital)

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

Apologies

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

Mavis Machirori (Senior Researcher, Ada Lovelace Institute)

Michelle Thompson (NHS patient and public voice partner)

Actions

4.01: Return to group with update on behaviour science, national data opt-out work. [March 23] (Data Strategy Team)

4.02: Indicate whether actions are on track for completion or delayed. [March 23] (Data Strategy Team)

4.03: Members to review and share any comments on statutory guidance and data narrative (5 promises). [Comments needed for statutory guidance by 20th February, comments on data narrative by end of February] (Members)

4.04: Members to provide any questions or comments on ‘Commitment delivery update’ paper via email [Due February 28th] (Members)

4.05: Return to group with update on data access and linking policy [May 23] (Data Strategy Team)

4.06: Members to share feedback on hybrid format of meeting via email (Members)

4.07: Members to share suggestions for future agendas via email (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. The Group were asked for questions or comments:

Action 3.03 and 3.05 - the group had no further comments at this stage.

Action 2.08 was confirmed as complete, RP shared the report

The group asked for an update on the recent transfer of functions from NHSD to NHSE and expressed disappointment that this had not been included as a substantive agenda item, following a previous update.

LG updated the group:

• On 1st February, regulations came into effect transferring the functions of NHS Digital to NHS England, and abolishing NHS Digital
• This has created a single, central authority responsible for all elements of digital technology, data and transformation for the NHS, which was a key recommendation of the review by Laura Wade-Gery into how we can improve the digital transformation of the NHS. The recommendations were accepted by the government in November 2021, which announced it would merge NHS Digital into NHS England as soon as legislation allowed.
• The transfer of the functions of NHS Digital to NHS England will not in any way weaken the safeguards we have in place for the safe and appropriate use of patient data.

Further discussion focussed on the draft statutory guidance provided for by the transfer regulations and supporting communications documents, including the data narrative (or ‘5 promises’ document), which would be shared with members for feedback.

The group reflected that supporting communications (including the ‘5 promises’ document) would benefit from review to ensure they are accessible to a lay audience and to consider how it might be received by the public, as it could be critical to work on maintaining public confidence. The group noted that these supporting communications and other documents are a potential opportunity to link in with work under the data strategy. Furthermore, discussion was had around the importance of ensuring clarity around the independence of the new independent committee providing advice and oversight of access to data.

Action 4.01: Return to group with update on behaviour science, national data opt-out work.

Action 4.02: Indicate whether actions recorded from previous meetings are on track for completion or delayed.

Action 4.03: Members to review and share any comments on statutory guidance and data narrative (5 promises). Comments needed for statutory guidance by 20th February, comments on data narrative by end of February.

Item 3: Engagement and Data Confidence

Research in Progress

The Deputy Head of Communication gave an overview of recent communications work, highlighting stability of metrics relating to public attitudes and trust, as well as low social media coverage, with the little noise there has been focussed around the first-stage FDP procurement.

She updated on the public confidence campaign, which had previously been brought to the group. We are currently in the 1st phase of the campaign. This has entailed significant work in mapping requirements and scoping work on the data pact and the standard for engagement.

She also updated on research looking at segmenting the public and staff to better understand views and the potential to target sections of the population with specific communications and engagement strategies. She noted that there is upcoming further qualitative research with staff, which will then be followed up with quantitative research and then message development. Hope to return to the group with findings from quantitative research to share learnings and discuss response.

Meanwhile supporting ongoing programmes and looking to do deliberative engagement on reasonable expectations for live programmes (in March).

The group discussed this work update, agreeing that the research is very interesting. The group reflected on whether the qualitative research was representative of the wider population, and Deputy Head of Communication highlighted the importance of following up with quantitative research to better test initial findings and evidence any conclusions. The importance of putting the research into the context of people’s wider trust in public bodies was also raised.

Meaningful engagement: current and future patient and public engagement plans

The Senior Policy Advisor (Data Strategy Team) updated the group on patient and public engagement plans for this financial year (2022/23) and progress to deliver commitments in the data strategy: data pact, patient and public engagement standard and transparency hub.

He highlighted some outstanding questions:

1. Data pact - slowed activity to wait for pending announcements, do members agree that we should now progress plans for co-production?
2. PPIE – to what extent should we aim to provide explicit guidance on quantity and timing of public engagement?

He also updated on initial thinking for future engagement plans, for next financial year. Highlighting examples of policy areas we hope to engage the public on.

Discussion emphasised the need for clarity around terminology – engagement, co-production, consultation. Further discussion focused on the plans for the data pact, which will be co-produced with patients in focus groups. The importance of taking full advantage of the opportunities of the data pact was raised, with members concerned about the potential to miss the chance to be aspirational about setting out the potential of data. LG said she welcomed members’ thoughts and proposals for maximising this opportunity.

Secure Data Environment Awardee work

Chris Russell provided an introduction to how this work fits into overall landscape - highlighting that there is one national secure data environment (SDE), 11 sub-national SDEs, and one Genomic SDE, all underpinned by patient and public engagement. The Data for R&D programme commissioned IPSOS UK and Imperial College Health Partners to do baseline research on current state of play with engagement.

Amy Darlington presented on this work - the SNSDE patient and public engagement discovery phase – updating that they are currently undertaking a discovery phase across the network of sub-national SDEs to understand what engagement has happened to date and what potential opportunities there are moving forward to inform future engagement.

Group discussion around this work highlighted the importance of avoiding unnecessary repetition, whilst balancing the potential value of engagement at a local level. The group also highlighted the importance of resourcing and scale to delivering meaningful engagement.

Item 4: PR Campaign

The Head of Communications for GP Data gave an overview of the planned ambient PR campaign, updating that the campaign aims to have an early conversation with the public about data more generally, building awareness that data is used and what kind of things it is used for.

This campaign will use a case-study based approach, to talk about data in an engaging way. Cases studies will showcase stories ‘powered by NHS data’. She shared that the campaign pilot of 3 case studies would be delivered this financial year across NHS.uk channels and some paid social media., and that the hope is to iterate, learn more, and take the public on journey.

The group were supportive of the PR campaign, agreeing about the importance of ‘tying everything together. Members also highlighted the need to step outside of the ‘NHS-only’ box and consider wider applications to other areas.

Item 5: Commitment and Delivery Update

This item was not covered due to a lack of time. The group received a paper in advance of the meeting, and LG invited any comments or questions via email.

An update on SDE / data access and linkage policy would be brought to future meeting.

Action 4.04: Members to provide any questions or comments on ‘Commitment delivery update’ paper via email [Due February 28th]

Action 4.05: Return to group with update on data access and linkage policy.

Item 6: AOB and CLOSE

LG thanked attendees and closed the meeting. The next meeting would take place on March 22nd 2023, 14:30-16:00. Slides and minutes will be circulated.

The Group were asked to share if there is anything they’d like on future agendas and feedback on hybrid format.

Action 4.06: Members to share feedback on hybrid format of meeting via email

Action 4.07: Members to share suggestions for future agendas via email