Health and social care: data strategy

Introduction

Developing the first Data Strategy for Health and Social Care in Scotland is a shared Scottish Government and COSLA commitment, as set out in ‘Care in the Digital Age’ and Scotland’s Programme for Government. This Strategy is the result of extensive stakeholder engagement and public consultation throughout 2022. It seeks to make the best use of Scotland’s health and social care data to improve people’s health and wellbeing through improved, more sustainable, health and social care services.

It remains the Scottish Government and COSLA’s ambition to:

empower the Scottish people with greater ability to access and have greater control over how they manage their own health and social care data where it is safe, legal and appropriate to do so, and for health and social care staff to have rapid access to the information they need to deliver the best possible care.

This Strategy is the first step in meeting a greater ambition to improve access to, and sharing of, health and social care data for individuals (adults and children); and across intricately linked areas, such as housing, social security, and education. The Strategy sets a framework for the ethical, transparent use of data by health and social care providers. It also identifies and addresses the first set of challenges we need to resolve before we can begin to address the more complex and detailed challenges that we know exist.

Considerable work is already under way across health and social care to improve the way we gather, store, and open up access to data. The proposed national ambition to develop a National Care Service for Scotland will potentially bring significant opportunities to transform integrated care and set a new direction for how care can be delivered in a digitally-enabled, data-driven future. For the first time, the range of strategic commitments around the use of data are being brought together under one dedicated health and social care Data Strategy.

Similarly, there are opportunities to improve citizens’ access to services and data as key contributors to improving population health and supporting a reduction in health inequalities including through the Care and Wellbeing portfolio approach.

This Strategy introduces, and commits us to, a shared set of ethical principles which will be central to all data considerations going forward. These principles apply equally regardless of whether it is an NHS organisation, a social care organisation, an academic body or a research company looking to utilise health and social care data:

• We will maintain a people-centred approach and strive to ensure data is collected, organised, and made available in a manner that is intended to suit the individual’s needs, and supports compassionate care.
• We will work to keep health and social care data safe and secure in order to maintain public confidence and trust in our management of data.
• We will always be clear about the intended benefits and potential risks that arise from our use of health and social care data for individual care, performance, and research.
• We will improve and increase individuals’ involvement in the development, design and improvement of health and social care data use in Scotland, where it is reasonable and appropriate to do so.
• We will take an equalities and human rights-based approach, drawing on the PANEL principles, ensuring we always maintain a choice in non-digital routes to access health and social care data.

There are complex and sensitive challenges to explore when it comes to data, and in the levels of digital maturity among health and social care organisations. The social care sector alone has varied levels of data maturity between organisations. There are 32 local authorities holding care data and approximately 1,150 private, third, and independent sector organisations delivering adult social care services in Scotland. The majority of these (60%+) are small scale services employing fewer than 50 people. They are unlikely to have significant internal resources in terms of IT or HR. Their capacity to move to standardised systems and provide more timely data will be limited, and this needs to be taken into account when planning any changes to staff recording and systems. Scottish Care details the data landscape in independent social care in the June 2021 report: Seeing the Diamond in Social Care Data.

Similarly, there are several thousand private organisations involved in the delivery of NHS care, from high street pharmacists and dentists through to local GP practices – all of which are legally responsible for the data they use. Making data flow effectively across thousands of different organisations, in a safe, secure and transparent way – whilst opening up greater access to the public – is an enormous undertaking.

This Strategy recognises that a single document will not suffice. Instead, the Strategy will be a multi-year effort requiring regular updates and refinement with multiple iterations published over a five-year period. The Strategy document sets out the ambitions and principles with fuller details available in associated appendices. Actions resulting from this Strategy should not be viewed in the short-term: we acknowledge that to truly achieve our vision will require time and incremental change as funding and resources permit. In taking this approach, we will learn from our shared experience and our ongoing stakeholder engagement and participative work with the public to ensure that deliverables are appropriate, proportionate, and achievable.

Consultation and engagement identified challenges within eight priority areas for action:

• ethical approaches of data;
• data access;
• talent and culture;
• protecting and sharing data;
• technology and infrastructure;
• information standards and interoperability;
• creating insights from data, and
• supporting research and innovation.

What do we mean by health and social care data?

In this Strategy, health and social care data is defined as any information about an individual or many people which is needed by any health setting, social work, third and independent social care organisations, family or unpaid carers to help to maintain or improve people’s health, welfare and wellbeing. It is information generated by individuals or agencies in the health and social care sector. This can be extended to people using everyday technologies (e.g. fitness trackers), health and social care services or researchers. It can be used to provide care and support or plan services, identify and manage risk, protect individuals or the public. It can also be pooled together (‘aggregated data’), to produce statistics or management information. You can read more about the definition of data in the UK Government’s National Data Strategy.

This Strategy addresses both the primary and secondary uses of health and social care data. Primary use of data means the processing of personal electronic health data for the provision of health services, to assess, maintain or restore the state of health of the natural person to whom that data relates. This includes the prescription, dispensation and provision of medicinal products and medical devices, as well as for relevant social security, administrative or reimbursement services. Secondary data is the use of aggregated health data from population-level sources such as electronic health and social care records, health insurance claims data, and health registry data to improve personal care planning, medicines development, safety monitoring, research, and policymaking.