Health and social care - data strategy: 2024 update - progress and priorities

Ethical Approaches to data

We want to embed an ethical, open, and human rights-based approach to the use of health and social care data in Scotland which maintains public trust and confidence.

What we have achieved so far

Ethical approaches to data are core to all the priority areas within the Strategy and our commitments to ethical working underpin all other commitments within the Strategy. In our first year we have:

• Improving Protected Characteristics Data. In recognition of the potential to use data to reduce inequalities in Scotland, the Strategy committed to improving the quality and consistency of protected characteristics data, including ethnicity data to ensure we provide equitable care for everyone. A Short Life Working Group was established to develop a consistent approach to improving the collection of ethnicity data. Additionally, an equalities data set was developed which is now available, with appropriate permissions for research within the national Safe Haven. This population wide dataset increases Scotland’s analytical potential and will enable researchers to build evidence on the impact and outcomes on equalities. Our initial focus has been on improving race and ethnicity data; however, we are committed to improving data across all protected characteristics. We will continue to work with suppliers and stakeholders across the health and social care sector to outline the minimum expectation for collection of this data to ensure that systems have the capacity to collect this information.
• Ethical Digital Nation. The Scottish Government have concluded research to inform development of a prioritised action plan and roadmap which will set a clear direction for the ambitions of Ethical Digital Nation work for the next three years. Initial research has been undertaken with members of the public and stakeholders to open the dialogue of how ethics is discussed. This research has provided a foundation of values that should be considered in future communication and messaging campaigns going forward.
• Data Ethics. The Scottish Government has undertaken a public engagement project on the use of data in the public sector in Scotland. This resulted in the formulation of a set of public led guidelines for the ethical use of data. A report from this public engagement will be published in Spring 2024. We will encourage the use of these guidelines and ethical frameworks to guide the collection and use of health and social care data in Scotland to build trust and transparency with the public and ensure that health and social care data is being used in an ethical manner.
• Digital Inclusion. We are aware that some individuals may not be able to or may chose not to access their health and social care data digitally, therefore for all our programmes of work we will ensure non-digital access to data will be facilitated to ensure equality of access to health and social care data.

How this helps to achieve our vision

• While the effective use of data offers huge potential, we understand that data also has the potential to exacerbate existing inequalities in our health and social care sector. By laying the groundwork in our approach to improving race and ethnicity data, we are beginning to address longstanding inability to take a data-driven approach to removing inequities from our health and social care system. We are also creating a template that can be used in the future as we look to improve the quality and consistency of other protected characteristics data, such as data on sex and gender. All this is being underpinned by engagement with those with lived experience and the findings of our work in being an ethical digital nation to ensure that Scotland can use data in a trustworthy manner that respects human rights and combats inequalities. Without combating these inequalities, we will never be able to achieve our vision of improving care and wellbeing of everyone in Scotland.

What’s next for 2024-25?

Our priority for 2024-25 is to:

• Work towards building transparent approaches that will help to maintain, and build, trust of the public by starting work to improve the provision and signposting of information about how individuals’ data is used by health and care services.