Meeting minutes - September 2022

Date: 7 September 2022

Time: 13:00-14:30

Venue: MS Teams

Chair: Jennifer Boon (Deputy Director of Data Policy, Joint Digital Policy Unit, NHS England Transformation Directorate)

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

Matt Hennessy (Regional system representative, Greater Manchester Health and Social Care Partnership)

Louis Holmes (Policy Manager, Care England)

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

Linn Philips (NHS patient and public voice partner)

Rachel Power (Chief Executive, Patients Association)

Michelle Thompson (NHS patient and public voice partner)

Helen Wilkinson (Research and Information, Local Government Association) - deputising for Philippa Lynch (Senior Data Specialist, Local Government Association)

Head of Digital Oversight Team, Joint Digital Policy Unit

Head of Cross-Government Data Strategy, Joint Digital Policy Unit

Deputy Head of Communications, NHS Transformation Directorate

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

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

Apologies

Nicola Brassington (Deputy Director of Data, Analytical Strategy and Burden Reduction, Joint Digital Policy Unit)

Chris Carrigan (Expert Data Advisor, Use MY Data)

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

Philippa Lynch (Senior Data Specialist, Local Government Association)

Mavis Machirori (Senior Researcher, Ada Lovelace Institute)

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

Actions

1.01: Return to meeting with an overview of how this group relates to other data strategy groups (JB/Data Strategy Team)

1.02: Put together more information on increasing individuals’ access to their data to share with the group (JB/Data Strategy Team)

1.03: Talk to ASC colleagues about how best to engage DLUC (JB/Data Strategy Team)

1.04: Provide group with overview of timeline of key commitments in the data strategy (Data Strategy Team)

1.05: Reach out to Healthwatch England to engage with them on our plans for public engagement (Data Strategy Team)

1.06: RP and Senior Policy Advisor (Data Strategy Team) to discuss her work on patient partnership in design and delivery of services (RP and Data Strategy Team)

1.07: Add impact of proposed data protection reforms on the Data Strategy to agenda for next time (DCMS Data Protection and Digital Information Bill) (Data Strategy Team)

1.08: DHSC, Care England and LGA to discuss data linkage with non-health data in SDEs outside of meeting (Head of Cross-Government Data Strategy, Joint Digital Policy Unit)

Item 1: Welcome and introductions

Jennifer Boon (JB) opened the meeting, welcomed attendees and facilitated introductions of the group.

Item 2: Overview of the Group

The group received the terms of reference prior to the meeting. JB highlighted key points from these terms of reference focusing on an overview of role and responsibilities of members and highlighting that the chair will report back any decisions made to the group. The group would be expected to adhere to Chatham House rules: speak freely but do not attribute comments.

Members asked how the Group related to other groups at the national level. The next agenda item would cover governance for the data strategy. Specific programmes would have their own stakeholder advisory groups.

Action – JB / Data Strategy team to return to meeting with overview of how this group relates to other data strategy groups

Item 3: Summary of the data strategy and its implementation governance

JB presented an overview of the data strategy. This included the context and need for the strategy, the future that the strategy aimed to deliver, and the importance of building and maintaining public trust and transparency in order to achieve the strategy’s goals. She also outlined implementation governance for the strategy, including an implementation board, communications delivery group and the National Data Advisory Group.

Members asked:

• Whether empowering people (patients) to use their own data was one of the headline goals of the strategy. In response, JB agreed it was important and noted it fell under chapter 1 of the strategy (improving trust in the health and care system’s use of data). It was also highlgihted that access to your own (raw) data was only the first step, you had to think about how people were empowered to be able to use it.
• Whether the Department for Levelling Up, Housing and Communities (DLUHC) were included in any of the governance groups, given that adult social care data reporting structures were influenced elsewhere. Adult social care teams from DHSC were included on the implementation board but DLUHC were not.
• How the Department and NHS England envisaged the Group providing advice and comment across all issues in the data strategy. The aim was for a co-creation approach to agenda setting for this meeting, so a combination of issues where advice was wanted but they also wanted the Group’s input on what would be good to discuss.

The Group also noted it was important to have the space to test products with the public and it would be good to explore how we could co-design with the public as part of this Group. It was agreed this Group was a valuable way to explore how best to do public engagement.

Action – JB / Data Strategy team to put together more information on increasing individuals’ access to their data to share with the group. 

Action – JB / Data Strategy team to talk to DHSC adult social care colleagues about how best to engage DLUHC.

Action – Data Strategy team to provide group with overview of timeline of key commitments in the data strategy

Item 4: Forward look: national public engagement

Senior Policy Advisor, Data Strategy Team presented an overview of the commitments in the data strategy relating to public trust, highlighting commitments to public engagement at several levels:

• Large scale national: nationally representative groups, will be securing a supplier to set up and advise best methodology. Hope to begin December 2022.
• Seldom heard groups: minority groups not usually meaningfully represented in main cohorts. Seek views on topics covered in national engagement but also data issues more prevalent in these communities.
• Regional engagement: working with ICS and regional leaders to design sessions that focus on their locality and issues most relevant to them.

We would be following Science Wise principles for public engagement. We did not plan on offering full decision making but did want policies to be informed by the public’s views. We would bring back to the group when plans more established.

In discussion, members asked:

• Whether there had been any contact with Healthwatch England and the Academic Health Science Network. It was confirmed there had been engagement with the former but not the latter.
• Whether people with a learning disability would be included in the seldom-heard groups. This group might have specific needs that need to be addressed, for example the ability to consent and the need for easy-read documentation. The team wanted based the seldom heard groups on the policy issues relevant to those groups, so those chosen would depend on analysis of the policy issues. They would look to have a session on people with learning disabilities.
• How can people influence decisions and what was this Group’s role in informing public engagement, as we needed to be clear about the purpose of engagement and what it was trying to do. It was important to be clear about the differences between engagement, co-production and communications. The engagement was in early planning stage and the team hoped for this Group to be closely involved. We would need all types of engagement for different products but agreed it was important to be clear about which are being used when. Additionally, for each deliberative session, the team would recruit an oversight group to discuss content and materials to be shared with members of the public.

Action – Data Strategy team to reach out to Healthwatch England to engage with them on our plans for public engagement.

Deputy Head of Communications (NHS Transformation Directorate) presented a communications update. It was noted this related to communications across the whole of the NHS Transformation Directorate.

They were currently undertaking behavioural science research to understand the influence of reactive media on public perceptions, and also commissioning public qualitative research into individual programmes, public perceptions and expectations in terms of transparency. The research was designed to inform the information communications campaign and ensure it can be done in a measured, targeted and meaningful way. The goal was to improve and increase permanent resources available to public.

The short- and long-term objectives of communications campaign were:

• Short: maintain high levels of trust and minimise reactive spikes in opt-out levels.
• Long: deepened awareness and raised levels of informed support for better use of data.

The were working on improving knowledge about the audience with which we are trying to communicate, and their needs and expectations. We knew that largely there was a stable opt-out rate but there could be reactive spikes to individual news stories. They were working to understand the role of communications in responding to this and whether there were groups we needed to speak to in a different way in order to engage them. Would also like to have more staff research.

They were also starting to track and understand public perceptions of health care systems use of data. They knew there were high levels of trust in NHS, however it was not always an informed trust but based on assumptions. They wanted to build understanding and support for work we were doing, so had to realise that we were starting at low base of understanding which presented a significant challenge. Timing and partnerships would be critical.

They were keen for this group to support this work and will make sure they were well sighted as work progressed.

Members asked:

• Should the NHS Confederation be included? In addition, we should come from a place where we assumed the public didn’t trust and think about what the barriers to improving their trust might be. The representation of staff was important for the group and additional staff voices would be valuable. The team were surprised that the response regarding trust in the NHS’s uses of data was so positive in the monthly tracker, but agreed this was just the surface detail and more granular information was needed and hence a critical focus on the research piece.

Item 5: Trust and transparency products

Senior Policy Advisor, Data Strategy Team, presented.

There were three major national trust and transparency products:

1. Standard for public engagement – consistent approach when engaging with the public and staff.
2. Transparency statement – increasing transparency important part of building public trust, currently no single place that provides information of how publicly held health and care data is used.
3. Data Pact – agreement between public and health and care system, setting out how health and care data will be used.

They discussed Data Pact in more detail and asked group for comment. In particular, the focus was now on how best to involve the public in co-design and co-production. They had been working on a draft but would welcome feedback from this Group on the ideal structure for the product and what level of draft should be shared with public assemblies.

Members commented:

• It was great to see it would be coproduced but why not start with asking the public what they wanted to see in the Pact.
• Some draft ideas would be done easily with a few focus groups to start.
• The team should start by identifying what are the issues that they wanted the Pact to address and then take a blank draft to the public.
• The suggested structure might only facilitate discussion about ‘safe areas’. Something was needed that would prompt discussion about thorny issues and grey areas.
• They agreed that a blank sheet and asking what people wanted to see was a good starting point, not least in order to find out if a pact would be useful and what they wanted from it. However, members were concerned that if engagement was too early and people asked for things that were not politically feasible how that would be handled. It was important to distinguish whether they were co-producing a data pact or co-producing the way data is used as these were not the same.
• On the importance of getting terminology right before going to the public. Those in the social care sector were not just patients, so it was important to use ‘people’ not ‘patients’.
• Rather than going with a draft pact, go with pointers of things that want to cover. It was useful to ask if there should be a data pact. If so, then you could start with ‘we think should cover this, what do you think it should cover?’
• Be clear what was up for discussion and what was already decided (but could still be included in the pact)

Action – Rachel Power and Senior Policy Advisor to discuss Rachel’s work on patient partnership in design and delivery of services

Item 6: Transition of NHS Digital to NHS England/Data Safe Haven

Head of Digital Oversight presented summary of work ongoing to transition NHS Digital to NHS England. The Group had received a paper in advance.

The team were working to ensure data was safe in NHS England and that people would have confidence in this. They were also working on the technical and legal basis for the transfer of NHS Digital (NHSD) into NHS England (NHSE), which included making some alterations to the existing regulations to ensure good practices that existed in NHS Digital continued.

There are a wide range of related issues and will be consulting on this work to ensure cover areas of most interest to stakeholders.

They were hoping to have concrete regulations which could be shared soon, and would have a continuing consultative process as these were refined and guidance was produced. They would need approval from devolved administrations (DAs) as some functions impacted DAs and the system handled some DA data. Therefore, their consent was needed to move NHSD to NHSE.

Members asked:

• Whether they envisaged the regulations being a template for ICSs. The team agreed this would be a good starting point. NHSE would be expected to have suitable external scrutiny, which might well include how NHSE oversees the work of ICSs in relation to data.
• Whether this would impact researchers’ requests to access data (and specifically the time requests took). The safe haven arrangements should not impede access to data and, in theory, would provide a basis for a swifter response to data requests. The transparency and external scrutiny of the data functions would enable monitoring of the effectiveness with which NHS England would exercised these functions and the increasing use of Secure Data Environments would support improved access to data for those with a legitimate research need but whilst making the data more secure.
• Did any of the proposed data protection reforms have any implications for this (the data safe haven) or any of the rest of the data strategy. They did not for the safe haven but it was agreed this would be an interesting item to update the Group on.

Action – Data Strategy team to add impact of proposed data protection reforms on the Data Strategy to agenda for next time. (DCMS Data Protection and Digital Information Bill)

Item 7: Secure Data Environments

Head of Cross-Government Data Strategy presented an overview of secure data environments (SDEs), highlighting them as a commitment made in the Data Strategy and describing what SDEs would look like as well as the intended benefits to the system. The intention was to have SDEs for multiple uses, including research as well as population health planning. The summary timeline for SDEs was presented, with public and patient engagement points throughout, including as part of large scale public engagement committed to within the Data Strategy. The high level guidelines on the approach to SDEs was published on 6 September 2022.

It was agreed to return to group for a deeper dive as the project progressed.

The Group:

• Noted it would be helpful in the development of SDEs if the programme could consider how linkage to non-health data sets would happen in the new system and how to articulate this. It was agreed this was important and the team were actively working on guidance for linking health and non-health data. They would welcome further discussion on this.
• Highlighted the importance of clarity of language and the need to be clear on what active involvement with decision making meant.

Action – DHSC, Care England and Local Government Association to discuss data linkage with non-health data in SDEs outside of meeting.

Item 8: Any other business

JB thanked attendees and closed the meeting. Slides and minutes would be circulated.