Meeting minutes - June 2023

Date: 13 June 2023

Time: 10:00 - 11:30

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)

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)

Linn Philips (NHS Patient and Public Voice Partner)

Rachel Power (Chief Executive, Patient’s Association)

Head of Data Strategy Joint Digital Policy Unit

Senior Policy Advisor Joint Digital Policy Unit

Senior Policy Advisor Joint Digital Policy Unit

Policy Lead Joint Digital Policy Unit

Strategy Lead Joint Digital Policy Unit

Apologies

Chris Carrigan (Expert Data Advisor, Use MY Data)

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

Actions

7.01: Data Strategy Team to ensure alignment between the launch of one year on of Data Saves Lives and the ambient data campaign. (Data Strategy Team)

7.02: Final version of Care Data Matters Roadmap to be shared with the Group when live (Team Leader for Strategy and Funding, Adult Social Care Data, Assurance and Support)

7.03: Louise working with comms colleagues to get implementation updates live in the week commencing 26th June, pending all the relevant approvals. (LG / Comms Team)

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 before the meeting. There were no questions from the group regarding previous actions.

NHS England statutory guidance

LG informed the group that, following the transfer of NHS Digital’s functions to NHS England, the accompanying statutory guidance on protecting confidential patient information had been published. She also thanked members of the Group for their input into it.

One year on

LG provided an update on the work to mark the first anniversary of Data Saves Lives publication, including a blog co-authored by Louise and Ming Tang and an accompanying implementation update for those working in the health and care system, the public, as well as the progress we’ve made and our plans for delivering the remainder of the commitments.

We were setting up a way for the public and stakeholders to get in touch with us and feedback their thoughts. We would be clear in the materials that this would be the start of the conversation, rather than the end; with further updates (and opportunities to engage with us) published later in the year.

We were working with our comms colleagues to get these updates live in the week commencing 26th June, pending all the relevant approvals.

Discussions focused on any implications of the Ambient PR Campaign being launched at a similar time to the anniversary blog and implementation. The Group suggested that the two products be aligned ahead of launch.

ACTION: Data Strategy Team to ensure alignment between the launch of one year on of Data Saves Lives and the ambient data campaign

Item 3: Care Data Matters

The Team Leader for Strategy and Funding, Adult Social Care Data, Assurance and Support and Senior Policy Advisor (Adult Social Care Data, Assurance and Support) presented on Care Data Matters, the roadmap and a draft version of the roadmap which was published in February 2023, in line with the Data Saves Lives commitments. This explained the aims and visions to increase the quality and quantity of the services and the use of digital services. The draft roadmap was accompanied by a survey to collect the views of those in the sector.

They sought the group’s reflections on the draft roadmap:

1. What information is needed in adult social care to support how it operates.
2. How information and data help shape the future of adult social care to improve quality.
3. Areas of challenge that might warrant prioritisation.

The Group suggested that the language used within the survey be made clearer to avoid antagonising organisations. A further suggestion was made to make the presentation more personal and make use of specific use cases to demonstrate how better data benefits individuals, potentially by linking to the ambient data campaign.

Additional clarity of the scope of the roadmap would also be appreciated. The current title of Care Data Matters might suggest the roadmap covers young people and learning disabilities. The Group suggested including adult social care within the title to reduce ambiguity.

The Group discussed the information needed to support how adult social care operates and emphasised the need to understand the landscape of the social care sector, including the workforce to assess how this impacts the lives of people being cared for.

Discussions also focused on the role of local authorities in enabling data collections that are largely driven by DHSC or the NHS. The Group suggested including DLUHC and LGA as the providers of guidance to local authorities to avoid issues with information governance. This was followed by comments to – where possible – make sure local authorities are able to access NHS/hospital data as well as vice versa to improve quality. However, the Group also drew attention to how the survey tended to focus on people receiving local authority-funded care but it remains important to consider the whole population.

Separate comments encouraged the team to not underestimate the potential scale of data collections making it important to ensure collections are proportionate and have a meaningful narrative, reflecting how it improves people’s lives. There were also requests for clear distinctions between data that must flow operationally and insights. Similarly, the group emphasised the need to avoid and/or reduce duplication as there is a lot of data sets.

A final version of Care Data Matters would be published towards the end of the year. This would include a summary of feedback.

ACTION: Final version of Care Data Matters Roadmap to be shared with the Group when live.

Item 4: Digitising Social Care

The Senior Programme Manager for Digitising Social Care provided an overview on projects being delivered by the Digitising Social Care team, specifically provider level data collection.

She provided a summary of the White Paper, People at the Heart of Care, which was published in December 2022 and outlined the 10-year vision for the reform of the sector.

Discussions focussed on whether it was quicker or better for care organisation workers to use digital as well as how objectives be delivered such as implementation support, standards and regulation, evidence building and benefits realisation, partnership with policy, skills and national networks, market assurance, charging reform and connectivity and cyber.

The Programme Manager for Digitising Social Care expanded on the team’s data collection work. He highlighted the ambition to change the way data is captured from care providers across the sector to capture the information needed to help drive improvements in care outcomes but at the same time reduce/avoid collecting same information from providers more than once.

The Group highlighted the importance of making a distinction between the different data asks i.e. councils required current data to ensure safe and effective care, which was not classified as a data collection. Also, need to recognise the added value of the systems that Skills for Care provide to support providers, which as a 'by product' provides oversight data.

The Programme Manager asked attendees “What they saw as the key challenges in achieving our goal?”

There were concerns over the proposed headings, indicating the creation of multiple datasets. Instead, the team were encouraged to be clear to the questions to be addressed. We should not only focus on what DHSC wants but consider what people working on the frontline need. It was also important to have transparency and be able to disaggregate national level data to a local level.

It was also noted the number of organisations in the sector that, as they digitised, could be trying to sort their own systems, storage etc. The Group queried whether any aspect of the program were encouraging convergence, i.e. organisations coming together to share solutions. The Programme Manager explained the team was looking at integration and a conversation was beginning about federated data platforms. However, the Group felt more could be done to encourage convergence and being able to leverage the buying power for better deals (as was done in the NHS).

Individuals also emphasised the importance of staff and public understanding in demonstrating how the two programmes fit together.

Item 5: Commitment and 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.

Item 6: AOB and CLOSE

Linn Phipps explained this would be her last meeting as her term as NHS patient and public voice partner was ending. Members of the group thanked Linn for her contributions to the Group.

The next meeting would be held on 20 July 2023 at 1300-1430, focused on Cyber Security.