Health and Social Care
Data strategy for health and social care
The recently published digital health and care strategy commits to the development of Scotland’s first ever dedicated Data Strategy. We caught up with the Interim Director for Digital Health and Social Care, Jonathan Cameron, to find out more about his thoughts and aspirations for the upcoming Data Strategy.
Jonathan heads up Digital Health and Care in Scottish Government, and is currently leading the Digital Covid-19 response across the NHS and Care sectors, including the Covid Vaccination system and Protect Scotland app. Jonathan has overall responsibility for the Digital Health and Care Strategy for Scotland, and for ensuring delivery of major programmes which support the strategy. Prior to joining Scottish Government in November 2019, Jonathan held a number of NHS IT and Digital posts, and has delivered major data, IT and eHealth projects and programmes across the UK. Innovation has also been a key focus and Jonathan was a CivTech challenge sponsor for a major SME development programme.
The strategy commits to the development of a dedicated Data Strategy for Health and Social Care, what is the purpose behind this?
The working vision of our Strategy is to ensure health and care data supports the delivery of health and social care services, and to ensure it does so in a way that empowers the citizens and supports innovation and research. We believe citizens should have access to and control over, their own health and care data – including the ability to view and update information contained in their records, and access information such as test results, letters and treatment and/or care plans. We will outline how we will ‘democratise access’ 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.
It is also important that health and care services are integrated and built on people-centred, safe, secure and ethical digital foundations. This allows staff to record, access and share relevant data across the health and social care system; encouraging them to feel confident in their use of digital technology in order to improve the delivery of care.
We also want to ensure Scotland remains a leader in health and care provision and innovation. It is therefore crucial that health and care planners, researchers and innovators have secure access to the data they need in order to improve the efficiency of our health and care systems; allowing them to develop new ways of working, as well as new treatments, drugs and products. It’s a huge task, but my team and I see it as vital.
How will you ensure that ethical approaches to data are embedded within the Strategy?
Ethical considerations are really important as people are quite rightly concerned about how their personal health and care data is stored, shared, secured and protected. In mid-2020, we established the Data Intelligence Network (D&IN) in order to provide safe, expedient and ethical access to use data and intelligence from across public services in Scotland to effectively manage our response to the public health emergency caused by Covid-19; central to this was the development of an ethical framework. This framework contains our guiding values and principles (including transparency, accountability, fairness, competency, voice and agency) and will continue to be central to the establishment of our Data Strategy.
We will also publish details of what is required to deliver secure systems across health and care. An agreed approach to data standards will direct and assure how data, including clinical data, is coded, stored and flows across the system, as well as how systems should be designed. We will modernise regulation and legislation where required to maximise the progress and benefits of digital technology. What the system looks like, and what services are developed, will be guided by a variety of standards, These include the Digital Scotland Service Standard, Scotland’s Digital Participation Charter and the Scottish Approach to Service Design. These emphasise the importance of service user involvement, of both staff providing services as well as those accessing health and care support and services. So, co-design and co-production approaches and ongoing service user participation and engagement at all stages are fundamental to how we will design, develop and deliver on the our Data Strategy.
How will you ensure the public and relevant stakeholders are adequately involved from the outset in the development of this strategy?
Key to successful delivery of the Data Strategy will be ongoing public and professional dialogue throughout the process. It is vital we develop and maintain public trust and support for this Strategy and are committed to making this process transparent and open. A starting point for that has been the development of this site where the minutes of the Data Strategy Working Group meetings and other relevant documentation can be accessed by all interested. We will also utilise our social media platforms to reach a broad range of individuals and groups in order to get people engaged and will build on our work on data dialogues to gain greater
insight into public attitudes in relation to their data and its use. This will be in addition to a wide range of engagement events across our stakeholder groups. It is really important that the engagement work for the Strategy dovetail with and draws on other related work, so mapping this is a vital first step and the Working Group will have a key role to play in this process.
For more information on the ethical framework and standards mentioned in this blog, please click on the links below:
To find out more about engagement on the Data Strategy for Health and Social Care or the work of the Digital Health and Care Directorate more broadly, please contact the Participation and Engagement Lead in Digital Health and Care – Nel Whiting Nel.Whiting@gov.scot or follow us on Twitter: @DigiCare4Scot.