Health and Social Care Data Board minutes: December 2024

Attendees and apologies

Chair

• Carol Sinclair

Board members

• Colin Birchenall (CB)
• JD
• ED
• TG
• MG
• AG
• Roger Halliday (RH) 
• Scott Heald (SH)
• Karen Hedge (KH)
• CK
• MM
• Eilidh McLaughlin (EM)
• PR
• Nicola Steadman (NS)
• LT
• Heather thompson (HT)
• Alison White (AW)
• Angie Wood (AWo)

Programme team

• RA
• SC
• RG
• GW

In Attendance

• JDa
• JJ
• EP
• LR

Apologies

• Jonathan cameron (JC)
• LH
• AK
• MMu
• JT

Items and actions

Welcome, Introductions and Apologies.

CS welcomed everyone to the fourteenth meeting of the Health and Social Care Data Board.

CS welcomed:

AG, Head of Major programmes Board – Scottish Government, CK, Chief Clinical Information Officer – NHS Borders as replacement for  BO’B, Nicola Steadman, Deputy Chief Medical Officer and Head of Medical Advisory Division – Scottish Government,  

LT, Head of Information Management – NHS Lanarkshire (Deputising for Donald Wilson) and Heather Thomson, Interim Chief Executive – The Data Lab as new members of the Data Board

CS welcomed JDa, Data Innovation and Change Lead, Scottish Government, who presented agenda item three.

CS also welcomed JJ, Project Manager, Safe Havens Charter, University of Dundee and LL, Chief Partnership and Strategy Officer, Research Data Scotland, who presented agenda item five.

Apologies were noted from Jonathan Cameron, LH, AK, MMu, JT

Minutes, Action Log and Policy update

The Board noted:

• Minutes from the meeting held on 27 August 2024 are published on our website
• all presentations from the previous meeting have been issued to board members.

Outstanding actions:

• DHC DB 078 - RA to scope out other standards used within Scotland particularly around schools and justice, to explore how IT providers have achieved data standards across Local Government in these areas
• DHC DB 088 –
  • SH and JC are continuing their engagement with stakeholders around the programme and will bring this item back to Data Board in due course – (early 2025)
  • SH and JC to reach out to the Racialised Health and Inequalities Steering Group to consider what resources they may be able to offer to help successfully conclude this work
• DHC DB 093 – SH to share the process for prioritising data requests received as part of the changes to Social Care Data Workstream
• DHC DB 094 – SH to follow up with JD on sharing good practice to improve efficiency and minimise unmet needs; and provide the Board members a short glossary on acronyms and definitions on data and standards 
• DHC DB 095 – SH and LH to discuss how the SCDIPB work links in with the National Information Governance workstreams
• DHC DB 098 – LH and MEB to reflect on the comments and questions raised and will bring this back to the board at a future meeting
• DHC DB 099 – RA to follow up with LH on public engagement and building a narrative around the Data Strategy
• DHC DB 100 – TG to follow up with SH on how to bring in external resources of Information Governance to discuss new ways of working
• DHC DB 101 – SC to share invitation to the IG workshop with Board members
• DHC DB 102 – GW to contact SY in the SNOMED CT programme about API links to the Terminology Server for inclusion in the API catalogue
• DHC DB 107 – CB to share the outcome of the Local Government data survey on data capabilities with Board members

Policy Updates and Sub-Board flash reports were shared with Board members prior to the meeting. Any feedback should be provided directly to RG and RA.

RA provided an update on the NCS Bill.

Next Steps:

CS, SH, RA and JC to arrange a follow up to discuss taking forward action item DHC DB 088.

SH will work with relevant individuals to close actions DHC DB 93-97.

CS, TG, PR and LH to bring a clear plan to the Data Board around actions DHC DB 98 through to DHC DB 101 to Februarys Data Board meeting.

RA, CB, EP and GW to arrange follow up to discuss action item DHC DB 107 and will present back to Data Board in February.

RA to provide the Data Board with an update to the NCS Bill in February.

Vision for Public Sector Data

CS invited JDa to provide an overview of the vision for public sector data.

The overview covered:

• rationale for why a vision for public sector data is required
• approach to creating the vision for public sector data
• vision and ambitions and how the vision seeks to meet the needs of the data community in the long term for public sector data for Scotland

• how the vision is aligning with existing strategies
• next steps

The Board was asked:

• to provide initial views on the vision and provide comment on how this might align with the Data Strategy
  • to identify which ambitions are obvious points of alignment
  • to discuss any of the ambitions which do not immediately appear to align with the strategy
  • how this work is incorporated into future iterations of the Strategy

The Board discussed:

• how the vision for public sector data aligns with the ambitions and vision of the Data Strategy for Health and Social Care
• the importance of having senior sponsorship or champions to emphasise this work to stakeholders and the public, to raise awareness and secure buy-in
• producing case studies to demonstrate the value of this work for Scotland to bring this work to life
• opportunities for presenting at conferences in 2025, such as:
  • Holyrood Digital Health and Care Scotland 2025, 18-19 Feb 2025
  • Futurescot Health and Care Transformation and Holyrood, 11 March 2925
  • Public Sector Data Summit, 13 March 2025.

Next steps:

JDa to reach out to RA, CS, SH and RH regarding taking the work of the “vision for public sector data forward and how best to develop senior sponsorship or champions to ensure this work is visible to wider stakeholder and the public.

Data Standards Assurance Process

CS invited GW and EP to provide an overview of the Data Standards Assurance Process.

The overview covered:

• the current landscape in Scotland and how this differs from the rest of the UK
• the suggested approach and standards for the pilot including:
  • governance
  • resources and responsibilities
  • publication of standards
  • the rational for choosing HL7 FHIR and SNOMED-CT as the main standards for the pilot

The Board was asked:

• to provide feedback on the options for the approach, resourcing, publication, and the plan for the pilot

The Board discussed:

• the mechanisms for enforcing adoption of data standards such as considering procurement processes and building standards into contracts
• the need to have an equal focus on health and social care at the beginning of the pilot in order to improve social care data
• the need to consider smaller standards as part of the pilot in order to reassure the Data Board that the assurance process is effective. Using smaller standards could be a quicker option to highlight success
• an initial test of the assurance process to consider where the touchpoints are with Local Government
• the importance of not underestimating the scale of this work and that dedicated resources would be required to effectively undertake a pilot rather than relying on volunteers including the good will of the Data Standards Sub-Board members which could lead to delays or missed opportunities
• PHS are already developing work in this space therefore there may be opportunities to utilise some of this resource to ensure there is no duplication of effort
• the need to ensure social care and social work is within the remit of the Virtual Centre of Excellence if this is to be agreed as a possible long-term solution for resourcing data standards governance
• the need to consider funding for the publication of these standards
• ensuring we are monitoring related work that is already ongoing such as, reference datasets, terminology server, metadata catalogues to ensure alignment with the work of DSSB  

The Board Agreed:

• option three – New data standards fully governed through DSSB; existing standards governed through their existing programmes and reporting into DSSB for the approach of the data standards pilot - providing that smaller standards are considered as part of the pilot
• option three – Hybrid approach. Publish “ISNs” on a central website and have a machine-readable data standards catalogue for the publication of standards was the preferred option however, the need to consider long term funding was observed
• that resourcing options need to be revisited
• the plan for the pilot, subject to the above requirements points being considered.

Next steps:

GW and EP to consider the feedback from the Data Board, revisit the resourcing options and provide an update to the Data Board in February.

GW and EP to arrange a follow up discussion with CB to highlight expertise within Local Government that could be resourced for the pilot.

Safe Havens Charter Refresh

CS invited LR and JJ to provide an overview of the updated Safe Haven Charter.

The overview covered:

• rationale and objectives for updating the Safe Haven Charter
• an outline of the key updates that have been made to the charter including:
  • adapting to modern governance and technology
  • supporting ethical research using a principle based approach
  • protecting privacy while advancing innovation
• timescales for the project
• how the refreshed Safe Havens Charter will strengthen Scotland's leadership in the use of health data for scientific research including examples of what the five principles mean in practice

The Board was asked:

• to approve the publication of the refreshed Safe Haven Charter

The Board discussed:

• as a network the four regional safe havens have a single front door to access and align Information Governance documents and processes which will be via Research Data Scotland.

The Board agreed:

• the endorsement of the Safe Havens Charter refresh for publication

Next steps:

LR and JJ to arrange a follow up session with CB and TG to raise awareness of the refreshed Safe Havens Charter with the National Health Service Scotland Information Governance Forum and Local Government.

Any Other Business

Next Data Board meeting: Tuesday 25 February 2024, 13:00 – 16:00