In this blog, Carol Sinclair explores how good quality health and social care data can improve health and care services. She discusses how the Data Strategy is helping to pave the way in improving gaps that exist in relation to health and care data.
Being the Grit in the Oyster
Doreen Grove is Head of Open Government for Scottish Government and member of the Digital Health and Care Data Strategy Working Group . She is not a data specialist; but as head of Open Government brings vital questions and challenges to the group that aim to help turn the grit in the oyster into a pearl. Her background is routed in Scotland’s culture and democracy; she has led Scotland’s work with the Open Government Partnership [OGP] for much of the last decade. OGP is an international organisation that recognises and promotes the benefits of strong democracies and places where governments see how they work being as important as what they do.
What is the pearl we are seeking?
This series of blog posts on the development of the Digital Health and Social Care Data Strategy have already set out the ambition and vision for the strategy; and in the latest we can learn about the insights already being gained from the careful and thoughtful engagement with a wide range of groups and individuals. They are worth reading as whole, but what leaps off the page for me is the commitments threaded through them all to working collaboratively; learning from a range of experience and expertise and a having a genuinely transformational goal. To develop a strategy that seeks to ‘democratise access to data by laying the groundwork for a radical shift in the power dynamic between the ‘state’ largely controlling how and when data is used, to one where citizens are in far greater control over their own data’, this is surely a worthy pearl.
As always the devil is in the detail, so how can open government practises help to achieve the transformation?
At the heart of open government is the recognition that trust is vital if we are to solve some of the most complex issues facing our society. Governments following the spirit and practise of open government recognise that trust is not one way – we have to have trust in other people, institutions and leaders if we are to make social and economic progress or have effective policies that depend on behavioural responses from the public.
In practise this means recognising that governments cannot, indeed should not, expect to have all the answers and should choose to work in partnership with others and to use all of the tools at its disposal to gather insights from as broad a range of experience as is possible. Recognising that the collective intelligence of partners – not just from other parts of public service, but also civil society organisations, communities and citizens will provide better informed strategies and more credible and effective policies.
This is a very different way of working for many organisations, so I am delighted to be part of a working group for Digital Health and Social Care Data Strategy that is actively seeking to put this into practise, and along the way, to help to transform not only how we use data and information more effectively, but also how we work in public services and how we value the contributions of others.
Why does trust matter?
The Global pandemic of the last two years has taught us all some tough lessons, it has shown that trust is not inevitable, it has to be earned, governments must constantly demonstrate that they are trustworthy as a source of information, advice and, where necessary, apply proportionate rules. How data and information about us is collected and used within health and social care really matters if we are to protect all, especially those who are most vulnerable. The pandemic has also clearly highlighted how inequality and poverty have a devastating effect on health and social care outcomes, to help solve it we need to collect the information and data which will ensure that it is properly understood and addressed.
We have not sat on our hands until now, the extraordinary collaborative work of the Data Intelligence Network (D&IN) set up in 2020 to provide safe, fast and ethical access to use data and intelligence from across public services to effectively manage our response to Covid-19; had at its core an ethical framework to aid decision making. Seeing the consideration of ethics as the business of everyone involved, recognising that people are quite rightly concerned about how their personal health and care data is stored, shared, secured and protected.
It is also worth considering today’s information environment; the prevalence of misperceptions and disinformation, where false information can spread ‘further, faster, deeper and more broadly than the truth’  has an impact on the take up of government advice on such things as vaccines or compliance with simple rules. This must not be underestimated or dismissed, it is now a factor that needs to be understood and responses and messages tailored to provide reassuring evidence. With accurate data being a pre-requisite for high quality communications. The powerful information campaigns in Scotland were instrumental in maintaining trust in the public health messaging. Taiwan, however, provides an useful example of how they utilised digital technology to democratise and manage responses to the pandemic.
Most importantly for the Digital Health and Social Care Data Strategy, ensuring that when data is made more accessible while protecting privacy and used proportionally, respectfully, ethically and securely, data and innovative use of technology it can empower people, empower communities, and this can save lives.
How can a dedicated Data Strategy for Health and Social Care support learning these lessons?
The health system remains the most trusted of our institutions, 93% of the people who contributed to the 2020/21 Scottish Household Survey agreed. This is head and shoulders above most other public services; people (rightly) value our health services and the skill and dedication of those who work in them. None the less; most also know it is an ever changing thing and the expectations of what can be achieved are ever rising. This means that the Data Strategy is an opportunity to plan a clear route for people to see how information about their health and social care can not only improve their own outcomes, but also contribute to wider benefits without compromising their privacy.
Trust ‘takes years to build, seconds to break and a lifetime to repair’; we know that trust in governments is falling globally and locally (parties or no parties). Addressing that erosion of trust in experts and governments can only be done by greater transparency, honesty and an increased involvement of the public. Governments across the world have drawn on the concept of trust to examine different responses during the pandemic including on compliance to different rules and measures such as vaccination uptake   and provide much for us to learn.
The team developing this strategy are explicitly seeking to learn these lessons and to apply them to a forward looking and hopeful strategy which sees the use of data and digital technology as game changing. It is an opportunity to think radically about:
- how, who, when and where we collect, share and use data safely
- what it means to be transparent about who benefits from its use and how they benefit
- who will make decisions; and how people are able to influence them – to improve the health and wellbeing of people in Scotland and support the economy
How will you ensure that ethical approaches to data are embedded within the Strategy?
The determination of the working group to listen and adapt to what they hear, is already a measure of success for me. Starting by listening to those people furthest from government, who have little access to or inclination to use technology will help us to have an inclusive plan which respects privacy, and is prepared to set out the moral and ethical dilemmas that are faced by decision makers, in order to protect people’s human rights and freedoms.
But as I said at the beginning we welcome the grit in the oyster and are particular keen to hear people’s concerns on any of these points during the engagement process, so that we can address concerns in the strategy. Like Colin Birchenall, who chairs this group, I am excited by the insights we are already getting from the engagement and there is still a lot of dialogue, discussion, debate to go; so if you are interested in where it goes next do keep an eye on this blog and if you have a burning question that can help us create the pearl let us know.
For more information on the Data Strategy for Health and Social Care, contact HSCDatastrategy@gov.scot
 Open Government Partnership | Committed to making governments more open, accountable, and responsive to citizens (opengovpartnership.org) and this links to Scotland’s current Action Plan Scotland, United Kingdom (opengovpartnership.org)
 Understanding our Political Nature – how to put knowledge and reason at the heart of political decision making Joint Research Centre, European Commission 2019
 Audrey Tang, Digital Minister explained – How Taiwan used simple tech to help contain Covid-19 –
Note – The results of the SHS 2020 telephone survey are not directly comparable to SHS results for previous years (different mode, smaller and different demographic characteristics of sample).
 When and How Trust in Government Leads to Compliance with COVID-19 Precautionary Measures – ScienceDirect and Pagliaro S et al. (2021) Trust predicts COVID-19 prescribed and discretionary behavioral intentions in 23 countries. PLoS ONE 16(3):e0248334.
 Open Response + Open Recovery (opengovpartnership.org) details more than 400 actions in response to Covid 19 by OGP members.
This blog explores the attitudes that the people of Scotland have in relation to their health and care data and identifies seven main relationship types that exist.
This research is helping shape our Data Strategy for Health & Social Care. We wanted to hear the views of people in Scotland, whose voices are often less heard, on accessing, sharing and controlling their own health and care data.
Our efforts did not go unnoticed at this year’s Holyrood Digital Health and Care Awards 2022 ceremony.
In October 2021 with the publication of the refreshed Digital Health and Care Strategy, we committed to developing Scotland’s first dedicated Data Strategy for Health and Social Care.
The update included a presentation on the findings from a review of existing literature on health and care data with a specific focus on public engagement.