Meeting minutes - February 2024

Date: 21 February 2024

Time: 10:30 - 12:00

Venue: MS Teams

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

Dr Nicola Byrne (National Data Guardian)

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

Louis Holmes (Policy Manager, Care England)

Emma Lagerstedt Understanding Patient Data (deputising for Nicola Hamilton)

Philippa Lynch (Senior Data Specialist, Local Government Association)

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

Rachel Power (Chief Executive, Patients Association)

Paul Carroll Thinks Insight and Strategy

Isabelle Evans Thinks Insight and Strategy

Policy Lead (Data Strategy Team, Joint Digital Policy Unit)

Communications Manager NHS England Transformation Directorate

Stakeholder and Public Engagement Lead (Data Access Team, Joint Digital Policy Unit)

Apologies

Chris Carrigan Expert Data Adviser, Use MY Data

Nicola Hamilton Head of Understanding Patient Data

Matt Hennessey (Regional system representative, NHS Greater Manchester)

Jacob Lant Chief Executive, National Voices

Actions

12.01 Secretariat to amend minutes in response to comment.

12.02 Secretariat to share details of the public consultation on the Health and Care Act (HCA) 2022 (information standards) with members.

12.03 Secretariat to share link to publication of the NHS England commissioned research on public attitudes to the use of data, once published.

12.04 The Stakeholder and Public Engagement Lead to develop proposals for a separate public engagement steering group, involving DSAP members.

12.05 DSAP members to share any further comments on the initial proposals on the approach to the review of opt outs with the Policy Lead (Data Policy Team).

Item 1: Welcome

Louise Greenrod (LG) opened the meeting and welcomed attendees. She noted that, following the review of the National Data Advisory Group/Data Strategy Advisory Panel, two new members had agreed join the Panel: Nicola Hamilton (Head of Understanding Patient Data) and Jacob Lant (Chief Executive of National Voices). Both, however, had sent apologies for this first meeting.

LG also noted that Paul Carroll and Isabelle Evans, from Thinks Insight and Strategy (the organisation delivering the large-scale public engagement) would be joining the meeting.

LG asked if there were any comments on the minutes. It was noted that the first bullet point under the FDP update was not quite correct as people were not opting out of the FDP specifically, rather the situation being described was opt out rates in light of the FDP announcement.

Action: Secretariat to amend minutes accordingly.

Item 2: Actions and wider updates

The action log was circulated before the meeting. There were no comments from the Panel. LG asked any members interested in attending the FDP demonstration to let the secretariat know.

LG noted that the consultation to commence provisions in the Health and Social Care Act 2022 – to make information standards mandatory and extend their application to private health and care providers – was now live and would run until 28 March. More information would be shared after the meeting.

Action: Secretariat to share details of the public consultation on the Health and Care Act (HCA) 2022 (information standards) with members.

Item 3: Public attitudes research

The Communications Manager (NHS England Transformation Directorate) presented key findings from the research commissioned by NHS England into public attitudes to the use of health and care data. This included segmentation of the population into six groups:

1. Confident data enthusiasts
2. Neutral followers
3. Cautious data sharers
4. Unfamiliar and unsure
5. Disengaged and health data protective
6. NHS and privacy sceptics

Each group had differing attitudes to the use of data, with the first three groups likely to be more positive about data use and the latter three more cautious or negative.

In conversation, members raised the following points:

• it was interesting that trust in how the NHS used data appeared to be higher than trust in the NHS more generally; however the latter could be driven by broader public concerns about NHS performance or sustainability
• some members were concerned that some cautiousness or worry about data use within the NHS may be due to a misperception of the NHS as one organisation, and that either patient data was available to anyone across NHS organisations or data use automatically involved sharing outside the NHS. It would be helpful to correct this
• the disengaged group were potentially the most interesting group and it would be interesting to understand whether they were not interested in issues around data or if their disengagement was driven by other issues
• the findings of the engagement sessions during the early development of the data pact offered some helpful guidance in engaging with some of these groups

This item was finished by saying the research report would be published and details would be shared once published.

Action: Secretariat to share link to publication of the NHS England commissioned research on public attitudes to the use of data, once published.

UPDATE: Link to the publication Public attitudes to data in the NHS and social care - NHS England Digital

Item 4: Public engagement

The Stakeholder and Public Engagement Lead presented this item, alongside Paul Carroll and Isabelle Evans from Thinks Strategy and Insight.

They presented and asked for comments on the plans for the large-scale public engagement. There would be three cohorts of work: the first focused on principles of data use and access, the second on opt outs and the third on future-facing issues. Current timings (subject to change) were May/June for the first cohort, August/September for the second and November to January 2025 for the third. Each cohort would have three tiers: the core deliberation, supplemented with additional inclusive engagement and deliberative polling.

In discussion, members felt the content was focused on the NHS and needed more consideration of the issues around use of data in adult social care.

The Stakeholder and Public Engagement Lead then presented on initial thoughts on oversight arrangements for public engagement and how to involve DSAP members, in particular whether DSAP could act as the steering group for this work. In response, members:

• felt it was better to have a separate steering group, with its own terms of reference and membership, rather than trying to repurpose DSAP. Many DSAP members may wish to be part of the steering group, however;
• thought there should be increased GP/primary care representation on the steering group;
• thought it would be helpful to consider the different segmented groups identified as part of the public attitudes research and what this might mean for membership of the steering group.

In conclusion, it was agreed to prepare a revised proposal for a separate steering group and circulate this to DSAP members for comment.

Action: to develop proposals for a separate public engagement steering group and circulate to DSAP members for comment.

Item 5: Data opt-outs and public engagement

The Policy Lead (Data Policy Team) presented on plans for engagement on data opt outs, including the principles for, and scope of, engagement. He noted that there would be constraints and that it would not be possible to cover all issues during the public deliberations. He finished by saying the team would want to bring back emerging findings from the review later in the year.

In conversation, members:

• thought that the scope of engagement should be considered further, bearing in mind how the public may think about data (for example, they may not distinguish between confidential patient information and other data);
• noted that privacy was not the sole issue for people opting out. Some were motivated by concerns about which organisations were receiving data and whether and how they benefited from its use;
• thought it was important to recognise that debates over the sharing and use of health data could become emotive and we should continue to make the case for the benefits in sharing data bearing this in mind;
• thought an additional topic to be considered was how to treat existing opt outs if the system changed in the future.

Action: DSAP members to share any further comments on the initial proposals on the approach to the review of opt outs with the Data Policy Lead.Item 6: Any other business

Item 6: AOB

There were not items of any other business. LG noted the next meeting would be a longer, strategic, face to face session and would take place in late April.