Health and social care: data strategy
Scotland’s first data strategy for health and social care, setting out how we will work together in transforming the way that people access their own data to improve health and wellbeing; and how care is delivered through improvements to our systems.
Information Standards and Interoperability
We will improve the quality of our health and social care data, and increase interoperability through adoption and use of common standards, making it easier to re-use and link data.
There is currently a lack of consistency in the way data is recorded across the health and social care sector, which increases the risk of poor data quality. As a result, interoperability of data and services can be difficult. This Strategy is an opportunity to begin working towards common standards and principles. This will make it easier to exchange data across health and social care, helping us to get the best possible value out of the data we hold. It will take time to agree and implement this common approach to data but is essential for getting the most from health and social care data.
Implementing more consistent information standards across our health and social care system represents a major undertaking for our health and social care sector. This Strategy recognises that our approach must be multi-year and take account of the varying degrees of readiness across the sector. A shared commitment across organisations to apply the new ways of working will be challenging as the current landscape is diverse, fragmented and of differing levels of data maturity. Implementing information standards will require agreement of preferred standards (and in some circumstances mandating), adjustments to existing systems; and the conversion of existing data to new standards. However, this work is essential in identifying, promoting, and aligning with wider work on regulating and legislating for better health and social care data.
Where we are now
It is currently challenging to share data effectively across health and social care organisations. This is because there are many different organisations who collect information in diverse ways using different systems or processes. Some organisations currently keep paper-based records and have no ability to store information electronically. This makes it difficult for humans and computers to interpret the information and match it up with data being produced elsewhere to inform appropriate responses.
Improved sharing of data will be addressed through adopting common approaches to describing, storing, and making information findable and re-useable. The first step in this journey is agreeing and implementing information standards across the health and social care sector. Information standards are a shared language for collecting, describing, and storing data, which minimise the time needed to find, combine, and share information across the sector. Some work has been done in this space for example, the Scottish Social Services Council implemented a core minimum data set for workforce and provider information in 2008 to facilitate consistent data collection, supporting workforce planning at a national level.
Information standards will enable organisations to use data sets for multiple purposes and enable links and trends to be identified across multiple data sets. They will also support the identification of data sets that may not have existed previously but now have a vital role in delivering better services.
Additionally, implementing a preferred set of information standards will assist data analysis, and help organisations break down national data sets to suit their individual needs. Improving the quality of data recorded and the ease in which data can be exchanged will support health and social care professionals to access the right data at the right time, to deliver quality services.
Where we want to be
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.
The National Digital Strategy outlines the need to adopt information standards across the public sector. Moving forward, we expect all health and social care organisations to also start working to the FAIR principles (Findable, Accessible, Interoperable, Reusable).
The FAIR data principles outline ways to make data:
- Findable – people who need data know that it exists and where to find it.
- Accessible – people understand the conditions to access the data safely and ethically.
- Interoperable – people can readily use the data in their systems and combine it with other datasets.
- Reusable – people curate data in a way that allows it to be re-used wherever it is need.
These principles provide a usable framework to improve the use and sharing of data. By committing to managing data according to these principles, the sector will improve the efficiency with which agencies can work together.
Additionally, we must begin to improve the use and interoperability of data in the health and social care sector as follows:
- Making better use of data in a more holistic, cultural, and proactive way.
- Improving the consistency of how data is gathered, stored, and accessed and re-used across health and social care. Proactively develop and implement preferred information standards at a national and local level as needed.
- Enabling better sharing of data across organisations – a coherent approach to data which requires a joined-up approach across the wider landscape.
- Implementing the FAIR data principles standards for the collection of data.
- Having assets that are discoverable across the sector and public sector.
- Providing timely and trusted access to authoritative data as a service. This requires a more coherent approach to be taken when recording data and assigning unique identifiers. This will mean that the information can be made available in ways that allow multiple organisations to use the data for a variety of different purposes.
Information Standards. Organisations across health and social care must work together to agree, adopt, and implement information standards to bring commonality and drive-up interoperability, enabling data to be used effectively. There are various standards that have different purposes such as:
- Record standards, which set out the minimum information that needs to be recorded from a health and social care perspective.
- Terminology standards ensure that a common vocabulary is used when recording information. For example, SNOMED-CT sets out clinical phrases that convey information about diagnosis, treatment, and symptoms. The use of SNOMED-CT for social care is also being explored in other countries as a means of supporting consistency and enabling effective integrated care.
- Classification standards such as International Classification of Diseases (ICD) 10 and Office of Population Census and Surveys (OPCS) are used to record episodes of care for statistical and epidemiological purposes. Technical standards such as Digital Imaging and Communications in Medicine (DICOM), FHIR and OpenEHR set out specifications that ensure systems can exchange information.
Setting out preferred standards will bring greater clarity to expectations when capturing and using data across health and social care, and clearly signal to suppliers what to expect when supplying technology and services in Scotland.
The National Care Service (Scotland) Bill, currently at the earliest stage of the Parliamentary process, has provision for mandating information standards across social care and health. Ahead of this power, the Scottish Government will explore the use of preferred standards. The Data Board for Health and Social Care will oversee and approve the initial programme to identify preferred standards. This work will be done collaboratively with partners across health and social care to ensure standards are fit for purpose and do not negatively impact local flexibility. The Digital Office and Improvement Service are working in partnership to establish a new Data Standards Board for Local Government that will adopt a more holistic approach to management of data standards within Local Government and will be key partners in this work.
There are varying degrees of maturity and readiness for standards across health and social care. Organisations will need to reflect on their capability to use data and assess their data maturity by completing digital maturity assessments every 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, both nationally and locally, will be made available based on these assessments.
In addition to sharing data across the health and social care sector within Scotland, occasionally there is also a need to share data outwith Scotland. For example, to ensure people’s data moves with them from Scotland to elsewhere in the UK; or sharing data with the WHO for statistical processing of morbidity and mortality information; or enhancing our understanding of how to improve health and social care services and improve outcomes for individuals across the UK. To ensure that we can collaborate with the rest of the UK in a safe and ethical way we will align with the standards used across the other four nations where practical to do so.
Case Study – ICD 11 Implementation
The International Classification of Diseases (ICD) provides a common language that allows health professionals to share standardised information across the world. The eleventh revision (ICD 11) is now entirely digital, and contains around 17,000 unique codes and more than 120,000 codable terms. The previous transition from ICD 9 to ICD 10 took several years and the intention was to ensure a swifter transition to ICD 11.
ICD 11 has a new user-friendly format and multilingual capability that reduces the chances of error. It has been compiled and updated with input from over 90 countries and an unprecedented involvement of health-care providers, enabling evolution from a system imposed on clinicians into a truly enabling clinical classification and terminology database that serves a broad range of uses for recording and reporting statistics on health.
Scotland is one of the first countries worldwide to take steps to implement and promote ICD 11. The first stage of implementation commenced in November 2022. The next phase of implementation will focus on the coding transition from ICD 10 to ICD 11 for data sets used in Scotland. This is an example of Scotland taking the lead on implementing national data standards to improve interoperability and, as a result, improve an individual’s interaction with health and social care services.
We will put the FAIR data principles and quality data at the heart of all data work in health and social care.
Who is it for?
We will work with organisations across the health and social care sector to ensure information standards are fit for purpose, and horizon-scan for good practice and developments in standards; for example, Open Referral UK and SAVVI standards. As we do so, we will always strive to recognise local needs and the varying implementation challenges in both health and social care.
Who is it for?
We will set clear information standards when specifying new system requirements, with system providers as part of programme procurement and implementation.
Who is it for?
Research & Innovation
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