Scottish Government publishes health and social care data strategy

The Scottish Government has published its ‘Health and social care: data strategy’, following the consultation analysis covered by HTN last week.

The strategy is described as setting the Scottish government’s “vision and ambitions to ensure that the data landscape is best placed to support key priorities”, with these ambitions to assist “key missions across the health and social care sector, such as improving population health and reducing health inequalities”.

The strategy is split into several key areas, including ethical approaches to data; data access; talent and culture; protecting and sharing data; technology and infrastructure; information standards and interoperability; creating insights from data; supporting research and innovation; and aligning work to Scotland’s priorities.

Here, we take a look each of these sections.

Ethical approaches to data

“We need to adopt robust data principles for how we collect, store and use data across health and social care,” the strategy states, adding that the scale of this is significant and will require utilisation of experience across the UK health and social care settings as well as international experiences.

Moving forward, the strategy says, all health and social care organisations will be expected to start working to FAIR principles. This means that data is Findable, Accessible, Interoperable and Reusable.

It states a number of additional aims:

  • To make better use of data in a more holistic, cultural and proactive way
  • To improve the consistency of how data is gathered, stored, accessed and re-used
  • To enable better sharing of data with a coherent, joined-up approach required across the wider landscape
  • To ensure that assets are discoverable across the sector and public sector
  • To provide timely and trusted access to authoritative data as a service

On information standards, the strategy states that organisations must “work together to agree, adopt and implement information standards to bring commonality and drive up interoperability, enabling data to be used effectively.” This is to improve clarity around expectations when capturing and using data across health and care, as well as providing clear signals to suppliers around what to expect when supplying technology and services in Scotland.

With regards to the varying levels of maturity and readiness for standards, the strategy explains: “Organisations will need to reflect on their capability to use and assess their data maturity by completing digital maturity assessments for two years. This will enable organisations to target data improvements so that they can deliver better on outcomes.” Funding to support identified areas of improvement is to be made available based on these assessments.

Looking at sharing data outside Scotland, the strategy specifies that where practical, standards will be aligned with those used across the other nations of the UK to ensure that collaboration can happen safely and ethically.

Data access

Here, the strategy sets out a desire to “empower individuals and professionals to make better informed decisions by providing access to the right data at the right time.”

The document describes how work is underway to develop a Digital Front Door which is to provide the public with access to their health and social care information. Data access will be enabled through this, and through engagement the government will confirm data sources and data sets that are safe to be consistently shared.

In addition, the strategy notes that the government is committed to “develop a nationally consistent, integrated and accessible electronic social care and health record”, which will ensure that people only have to tell their story once and that staff have the right information at the right time to deliver the right care.

“To improve professionals’ access to the right data at the right time we will set out principles to drive up discoverability, accessibility, interoperability and reusability,” the strategy continues. “This will make accessing data across organisations easier and enable better, more timely access to essential data across organisational boundaries, supporting staff to provide the best care possible.”

Talent and culture

“We want to attract, develop, support, and retain a workforce that is confident and competent in the use of data,” the strategy says. “This includes all staff having essential data skills that help us all to better manage the information we all depend upon, and advanced data skills that help us to create more insight from data.”

The strategy notes that an action plan is currently being produced to measure progress against the Building Digital Skills and Leadership Programme, which focuses on developing the skills required by staff to adapt to and use digital technology ethically.

It emphasises the importance of meeting the needs of specialist groups of staff, including:

  • A review of the Information Governance Framework set to explore and create tailored learning and development options for staff at all levels across health and social care
  • Knowledge Information and Data Workforce (KIND) creating a visual learning academy to support implementation of key priorities and scale-up of digital innovations within this specialist workforce area
  • Working in partnership across the UK to explore AI and what it means to the workforce
  • Exploring the application of the Digital Data and Technology (DDaT) Framework, to support consistency across the sector and provide specialist staff with access to learning and development opportunities
  • Equipping board-level executives and non-executives with the understanding of digital health, governance and leadership skills necessary to support transforming service delivery
  • Building understanding of the skills required for leading in the digital age through the Exploring Digital Leadership webinar series

The strategy adds that the Digital Leadership Programme is designed to support participants in developing the strategic leadership skills required to influence use of digital and data solutions in health and social care delivery; in addition, the Scottish government is developing a formal postgraduate programme offering three buildable qualifications with each course including modules on data.

Protecting and sharing data

The strategy states: “We want a trusted, secure health and care ecosystem where data is shared, managed and stored securely, consistently, efficiently and transparently.”

It describes how the Scottish government aspires to create a system for the protection and sharing of data that builds trust through participatory engagement; creates the conditions for a mature approach to ensuring value from information; and introduces a more balanced, federated model of decision-making, reducing variation across Scotland.

The vision, it continues, “is to have streamlined governance, assurance, and management of information assets that is more coherent and less fragmented across health and social care, to enable the realisation of benefits from digital and data-driven innovation. This requires a comprehensive approach to enable end-to-end ethical, rich, helpful, secure information across the health and social care sector that provides improvements in key areas, and continues to safeguard data and systems from cyber-attack.”

Planned improvements include:

  • Streamlining the current information governance (IG) model to secure the right balance in decision-making processes over health and social care data, and ensuring that a model is created which allows the public, data controllers and organisations to collaborate.
  • Bringing greater commonality and clarity in IG across health and social care, aligning processes and responsibilities into a more federated model.
  • Developing a Code of Conduct on privacy by design for partner organisations.
  • Co-producing solutions to IG challenges with partners and with citizen participation.
  • Harmonising understanding of IG and demonstrating IG maturity, providing clarity about what data protection legislation means to ensure efficient and safe sharing of data.
  • Setting out a national model for career pathways and continual development of those who work with the governance of health and social care data.
  • Investing in the right national tools for the IG tasks and processes and developing sector-specific policies and guideline to help compliance and improvement.
  • Providing added visibility and transparency towards enhanced management of existing valuable information assets across the landscape.
  • Scaling up what works well in IG and sharing good practice examples across the wider ecosystem.
  • Continuing to monitor and manage risks that arise in relation to data and new technologies.
  • Taking a strategic approach to cyber security, with the Cyber Centre of Excellence delivering cyber security services proactively and consistently across all NHS Scotland Health Boards.
  • Making best use of NHS audit reports to identify gaps in security maturity and approaches.
  • Developing cyber security standards further as part of the ongoing IG maturity work.
  • Developing governance structures and continuing collaborative engagement practices with the National Cyber Security Centre and across the wider community of public sector organisations.

Technology and infrastructure

“We want to make sure that we have the technology and infrastructure in place to equip us to better collect, store and use data,” the strategy reads. “This includes: structured data held within databases, unstructured data and information held in paper records, near real-time data from sensors and the Internet of Things.” 

The document shares an ambition for technology to provide more rapid access to the right data at the right time, to support developments in innovative new approaches, and to support access for people to their own data.

In order to achieve this, it sets out two key aims:

  • To adopt innovative new technologies, with Scotland’s AI strategy setting out the vision for Scotland to become a leader in the development and use of trustworthy, ethical and inclusive AI. It notes that AI can be used to potentially analyse and uncover insights and patterns that humans would struggle to find; to help professionals make better business and clinical decisions; and to generate additional capacity, ultimately improving the quality of health and care services. “As decision support mature, we will integrate them with innovative technologies such as AIto allow us to support health and social care professionals with validated evidence/guidance, create a learning health and social care system and reduce unwarranted variation, harm, and waste from inappropriate decisions. We will also seek to adopt other innovative technologies, such as Internet of Things sensors, that can be used to empower self-care and alert caregivers to deterioration in a person’s wellbeing,” the document adds.
  • To improve data quality across health and social care, with the Scottish government and COSLA (Convention of Scottish Local Authorities) to encourage organisations to transform their data to improve outcomes. “This will begin with assessing their data maturity and reflecting on how they can improve the quality, completeness and use of their data to achieve the ambitions of the strategy,” it says, adding: “Improving data maturity will also be underpinned by introducing new technologies and infrastructure where needed.”

The strategy highlights the importance of working closely with planning and procurement colleagues to ensure that contracts contain the necessary requirements to drive forward the infrastructure needed for care in the digital age, and also notes the need to keep the focus on the safety of those being cared for.

Net zero is also highlighted, with the strategy sharing aims to make a positive contribution to net zero by reducing the amount of duplicated data and the use of legacy infrastructure; capturing data in digital formats to reduce paper use; and seeking to host data in data centres powered by green energy.

Information standards and interoperability

Here, the strategy states: “We need to adopt robust data principles for how we collect, store, and use data across health and social care. The scale of this task is significant and will require utilising experience across the UK health and social care as well as international case studies and good practice.”

In this section, the strategy emphasises the importance of the abiding by the previously mentioned FAIR principles, and re-states the need to make better use of data; improve consistency; enable better sharing; make assets discoverable; and provide timely and trusted access.

Creating insights from data

The ambition here is to “work in partnership with health and social care to adopt a whole-system approach to creating insight from data that allow us to improve services. This includes the creation of insight to: inform communities, inform policy, identify, measure and monitor differential outcomes, experiences and access to services for different population groups, target interventions and support, improve services and improve partnership working.”

A key aspect of the vision is to create a complete system approach that can facilitate understanding of the issue, the context and the wider system, the strategy notes; this will allow management information data to be utilised in a timely manner and thus improve services by providing insight to decision makers and the public.

The approach to collecting and supplying data will be reviewed, focusing on how data is provided as part of an analytical pipeline, removing siloed structures; setting clear pathways to commissioning analytical work; and moving towards a whole-system approach to developing intelligence that can be used for improvements.

“The development of a whole-system intelligence model for health is already in progress,” the document acknowledges. “As part of this, we will consider how we can reinvent the way we approach intelligence, including how we can improve our ability to use near real-time data. Data integrity must be balanced with our ability to act on it effectively and efficiently.”

The strategy emphasises the need for data to adhere to the principle of collecting once and using many times, to reduce the administrative, technological and environmental burden of siloed data.

“We must also ensure that we support out analysts to deliver the insight required from the data,” it adds. “This will mean ensuring that we have the right technology and software, that we are clear on a common language across professions, and that we deliver the right training and upskilling to our analytic community.”

Information created from health and social care data must be translatable for the intended audience, including the public where relevant, and the strategy also notes that it is important to ensure that data is captured and used effectively for workforce planning.

Supporting research and innovation

“We will support research and innovation by facilitating safe access to health and social care data for industry, innovators and researchers, so that we can work together to develop better ways of working, better treatments, new medicines and improved services for care in Scotland,” the strategy shares.

It notes that the data generated through delivery of health and social care provides “a wealth of opportunities” for research and innovation, and can improve understanding of health, wellbeing, inequalities and poverty; monitor and assess safety and effectiveness of care; support individuals, carers and clinicians to manage conditions more effectively; evaluate new approaches; develop new improved tests, medicines and services; allow people to participate in studies and trials through digitally supported enrolment; and assess progress towards reducing inequalities.

Challenges are noted, including discovering what data exists and where to look for it; bringing separate data together; lack of understanding around access and approval routes; a need for clarity on terms of engagement, access and use; and a need for more opportunities to be offered for people to participate in studies and trials.

“Many of the developments set out elsewhere in this strategy will help to address these challenges including plans for streamlining information governance, updating clinical coding arrangements, new infrastructure such as the National Digital Platform, National Clinical Data Store, Seer and the launch of Research Data Scotland,” the document reads, adding that it is important “that use of data for research and innovation is built into the design of all new developments set out in this strategy and that this includes the data generated from new and emerging healthcare technologies such as AI, genomic sequencing and remote monitoring.”

Aligning work to Scotland’s priorities

The strategy notes that Scotland’s National Performance Framework sets out a vision for how to create “a more successful Scotland” and focuses on how the wellbeing of people living in Scotland can be increased through economic, social and environmental factors.

The strategy aligns with the areas shared within the vision which focus on citizens being healthy and active, and living in inclusive, empowered, resilient and safe communities. “However, this strategy seeks to contribute across each area of the framework,” it says, sharing an example of “taking an ethical, open, and human rights based approach to the use of health and social care data in Scotland, or in its acknowledgement that by collaborating with industry, innovators, and academia we can create economic value for Scotland in the form of high value jobs and investment, as well as social value in the form of improved public services and health outcomes.”

It notes that the strategy “directly contributes to our vision to improve the care and wellbeing of people in Scotland by making best use of digital technologies in the design and delivery of services.” It does so by working to the following aims:

  • Citizens have access to, and greater control over, their own health and care data, along with access to the information, tools and services needed to help maintain and improve health and wellbeing.
  • Services are built on people-centred, safe, secure and ethical digital foundations.
  • Health and care planners, researchers and innovators have secure access to the data they need in order to increase efficiency of systems, and develop improved ways of working.

Finally, the strategy shares overarching principles for a digital nation: to be inclusive, ethical and user-focused; have digital leadership and culture; be collaborative; data-driven; technology-enabled; innovative and sustainable; have a skilled workforce; and be secure by design.

To read the strategy in full, please click here.