The Covid era has provided an opportunity to “radically rethink” how Scotland uses data to improve the health and wellbeing of citizens, according to a leading data expert.
Dr Colin Birchenall, chief technology officer of the Digital Office for Scottish Local Government, says there has been a “dramatic shift” in how data is used in the health and care sector over the past two years.
The chair of the new Health and Social Care Data Strategy Working Group says that lessons learned during the pandemic will inform the development of Scotland’s first ever data strategy for health and care.
In a new blog post, Dr Birchenall said: “Over the last two years we have seen a dramatic shift in how data is used within Health and Care. Between us we have demonstrated that if data is made more accessible and used proportionally, respectfully, ethically and securely, data can empower people, empower communities, and this can save lives.
“By drawing upon this experience, the development of the first ever Data Strategy for Health and Care for Scotland provides a unique opportunity to radically rethink how we collectively use data to improve the health and wellbeing of people in Scotland.”
The strategy, which will set out a vision for the future of Scotland’s health and care data, is due to be published later this year.
The working group brings together expert representation from across Scottish government, local government and Public Health Scotland (PHS) to coordinate the development of the strategy. Its responsibilities include agreeing the route map’s key topics and approving commissions necessary – for example, if it was decided to commission consultants to analyse the formal consultation response.
Members include Albert King, chief data officer, Scottish Government, Doreen Grove, head of Open Government, Scottish Government, Alan Aitken, health and social Care policy, COSLA, and Vicki Bibby, director of strategic planning and performance, PHS.
But in what ways has Covid changed the way we think about data? According to Dr Nel Whiting, policy lead for participation and engagement at the Directorate for Digital Health & Care, the public health crisis saw a rise in the number of Scots accessing the Public Health Scotland Covid dashboard to “help them understand the situation locally and plan accordingly”. The number of views of the dashboard to date is 48.8 million.
It also saw citizens sharing their data through the Protect Scotland app in order to help manage the spread of Covid. In addition, Scots are increasingly engaging with health and care data to manage their own wellbeing, with a rise in the use of fitness tools such as FitBits.
Birchenall also revealed that an extensive consultation process to involve key stakeholders in the creation of the data strategy is now underway.
The working group has outlined a three-staged ‘stakeholder engagement programme’ to gather views from across Scottish Government, local government, public sector organisations, the third sector, industry, higher education institutes, and the public.
First, a range of workshops and meetings will be organised to gather information and to shape the draft strategy. The messages will then be tested through follow-up workshops and meetings.
Finally, a formal online consultation will go live in May 2022, accompanied by virtual or face-to-face workshops.
Birchenall said: “The stakeholder engagement will run in parallel with the development of the content for the strategy so that we can continuously adapt our draft content based upon what we hear in an iterative manner. And to be absolutely clear, we will be listening and acting upon what we hear.
“We will review the latest feedback from our engagements every time we meet as a working group (which is every two weeks).”
He added: “Many people we speak to will be very excited by the opportunity to make better use of data to improve health and wellbeing and to save lives. Many people though will be equally concerned about how personal data is used (and by whom).
“The success of the strategy will be dependent upon people’s trust. It is vitally important that the strategy is inclusive, respects privacy, is ethical, and protects people’s human rights.”
At this stage, the working group has engaged in workshops with NHS Boards, local authorities and Health and Social Care Partnerships, as well as third sector service providers and advocacy groups, academics, the innovation sector and industry.
Whiting said: “Some emerging themes include the need to build public trust around the issue of data, with this being connected to the need for transparency and ensuring ethical frameworks are in place and utilised.
“We are hearing a lot about how important it is that people/citizens are at the heart of our thinking on this and how vital it is that data flows through the system in a consent driven way.”
In addition, there are plans to form a new Health and Care Data Board, which will bring together a broader representation of stakeholders from across sectors to provide oversight of the working group.
Birchenall said: “This will ensure that the development of the strategy has the collective sponsorship and scrutiny that will be required for it to be a success.”
The board will also oversee the implementation of the strategy after it has been published.
He added: “As we look ahead for 2022 it is clear that it is going to be a very busy and pressured time for us before we launch the strategy in Autumn.
“We’ve got a lot of dialogue, discussion, debate, and drafting to progress between now and then, but I believe that the foundations are now in place for us to succeed and it’s clear that people (myself included) are getting very excited and motivated by the prospect of the strategy.”
For more information on the data strategy for health and social care and to learn how you can get involved, contact Whiting at Nel.Whiting@gov.scot