Digital Health and Care Data Strategy Working Group minutes: August 2021

Attendees and apologies

Attendees

• Alistair Hodgson (AH) 
• Penni Rocks (PR)
• Doreen Grove (DG)
• Imme Jones (IJ)
• Elena Beratarbide (EB)
• Nicola Edge (NE)
• Nel Whiting (NW)
• Ryan Anderson (RA)
• Carol Sinclair (CS)

Secretariat

• Simon Crawley (SC)

Apologies

• Alan Aitken (AA)
• Albert King (AK)
• Adam Lang, (AL)
• Vicki Bibby (VB)

Items and actions

Welcome, apologies and introductions for new members

The chair welcomed everyone to the first stand up meeting of the Data Strategy Working Group: Apologies noted and introduced Nicola Edge HSCA.

Minutes and actions arising from the last meeting

The minutes of the Working Group initial meeting held on the 10 August were agreed as an accurate record.

Engagement and communications plan for the health and care strategy

Nel Whiting presented and talked through the initial draft paper (see below).

The working group discussed different ways of public engagement, which included:

• investigate the Nesta underspend
• procurement challenges becoming a blocker
• literacy review from an international perspective
• utilising existing connections with Gartner

The working group agreed:

• second update of engagement plan to be presented at next Monthly meeting

Towards an engagement and communications plan for the health and care data strategy (paper for stand up meeting of the Working Group 24 August 2021)

Background

At its first meeting on 10 August 2021, the Data Strategy Working Group identified that an engagement and participation approach which embeds citizen voice from the outset is vital to ensuring we build public trust as well as creating an approach which truly facilitates citizens as key to shaping the agenda.

The issue of building public trust is particularly pertinent given the well-documented sensitivities around this agenda, particularly in relation to private sector access to public sector personal data. Recently reporting on the UK Government’s current plan to share GP patient data is illustrative of these sensitivities highlighting concerns about privacy and public trust more generally, repeating past experience in England.

According to the Open Government Participation Framework

“The drive to increase participation in, and with, government rests on two key principles:

• that people have the right to contribute to, and to influence, the decisions that affect their lives, choices and life chances
• that involving the people likely to be affected by the decision in the process results in better decision making”

The work of developing the data strategy will be formed around these principles. 

Given the necessity of working with the public to develop trust and the potential sensitivities in relation to the topic, it is proposed that the engagement is divided into three distinct but overlapping parts:

• public/citizen
• professional (recognising that this group will have different priorities but covering government, including ministers, the health and care sector across statutory, voluntary and private sectors, innovation and researchers across the private, academic and third sectors)
• media and interest groups

It is proposed that immediate focus is on ensuring public engagement approaches are in place. This is partly because learning from the work on public attitude’s to their data, its flow through the system and use will inform engagement with professionals. It is important to note that should we wish to procure facilitators to undertake an engagement approach, it will time to so do. As such interim approaches will be necessary.

It is also vital that the engagement work for the strategy dovetail with and draws on other related work. Mapping this is a vital first step and the working group will have a key role to play in this process.

What we already know (literature reviews)

• citizen-centred approaches to unlocking Scotland’s public sector data for public benefit programme – literature review undertaken by University of Edinburgh focussing on public engagement regarding the use of public sector personal data by/with the private sector (UK/international) over the last 10 years. In considering the literature covered in this review, though the focus was particularly on use by private sector much research covered broader points around public trust in data
• data dialogues programme – undertook a literature review on the issues of public trust and approaches to data (unsurprisingly, there is an overlap with the lit review above). It also produced a rapid literature review in relation to public engagement approaches (with a toolkit). Also further learning through the engagement projects that took place during the project (currently being synthesised and due to report in September)
• Alyson Mitchell’s work – learning from citizen’s panels
• information governance review – learning from professional (in particular in the health sector) relating to information governance
• learning from the Young Scot programme of work (though this looked at digital health more broadly than data)

The working group is asked to detail any further literature/learning which should be considered at this stage.

It is also possible to undertake a further literature review through the Scottish Government Library if gaps are identified at this point.

This information can help us to shape the focus/questions for engagement across the stakeholders, in particular with the public. The next phase of work will be to synthesise all learning and identify gaps and thus questions for engagement exercise.

As this is the vital heart of the engagement plan, it is proposed that the working group is involved in a workshopping exercise in due course to begin this process.

Citzen engagement that is ongoing/we can link in with

• the data dialogues programme provides a good foundation for work in this area. There is an underspend in the budget (as a result of changes due to COVID-19) which could be used to undertake specific engagement projects (further details to be provided by NESTA)
• from September, the website produced as part of data dialogues will be available as a tool that can be used in the engagement process. As it focuses on personas, it may be particularly useful as part of the professional engagement
• the ALLIANCE is currently funded through the Digital Citizen Board to run Citizen Panels and one of these could possibly be used to consider questions posed as part of this development work
• similarly, Young Scot have had previous engagement with a young citizen’s panel and broader work via the DCB. Follow up with Young Scot could be explored
• the D and IN are establishing a public engagement pilot panel, which is intended to act as a vehicle for regularly engaging the public on data policies and strategies. Anticipated to be running around November 2021
• the Digital Identity Board has an advisory expert group (including colleagues from civic society organisations) who might be able to offer some guidance
• the Peer Models Network is another model that might be utilised
• the Ada Lovelace Foundation has undertaken work for NHSx and might be able to work with us also

The working group is asked to detail any further public engagement should be considered at this stage.

Engagement with standing groups could begin quickly. However, thought needs to be given as to whether we need to procure a company to work with us to deliver further public engagement work.

Civil society groups/personal liberty advocacy organisations

Given the nature of this work, it is important these groups are specifically engaged with. This could potentially partly be done through the Digital Identity Board but further consideration needs to be given to engagement with this group. 

Consideration will also be given to the role of the Digital Equalities Reference Group.

Professional engagement

Work is underway on a stakeholder mapping exercise. Input from the working group to ensure this is comprehensive will be requested.

Communications

The working group expressed a strong desire for on-going open and transparent communication about its work.

Ideas being considered:

• use of citizen space for ongoing dialogue
• set up a page where minutes and other document can be placed similar to that used by the Women’s Health Group
• regular blogs and posts (supported by tweets etc) within DIN communications, on our website, through partner websites and newsletters, (full list to be created as part of the full engagement plan and with the input of the working group)

The working group is asked to detail any other ideas should be considered at this stage.

Strategy mapping

Full strategy mapping exercise. Input from the working group to ensure this is comprehensive will be requested by RA. Email sent 25/08/21.

Actions: RA/all members

Terms of reference (ToR)

The group discussed the creation of a ToR for the Digital Health and Care Data Board and held an early discussion on who the members of that board may be. The aim of the ToR will be to:

• explain vision, objectives, scope and deliverables (i.e. what has to be achieved)
• outline key decisions to be taken by the board
• detail board membership
• consider stakeholders, roles and responsibilities (i.e. who will take part in it)

The Working Group agreed:

RA will begin work on an early draft for a ToR for the Data Board, to be considered by the wider group at a future meeting.

Actions: all group, IJ/RA

Next steps

• second update on engagement plan
• development discussion around Data Board
• pace and progression of Data Strategy
• clearly outline what the engagement plan is