Health and social care - data strategy: 2025 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.

Progress in 2024:

• Improving Protected Characteristics Data – To ensure we provide equitable care for everyone we have continued work to improve the quality and consistency of protected characteristics data. Scottish Government have commissioned NHS National Services Scotland (NSS) to undertake work to enable the recording of race and ethnicity data in the CHI system. This will allow data to be collected once and re-used multiple times, ensuring data is accessible to allow for timely monitoring of health outcomes using race and ethnicity data. In addition, Public Health Scotland (PHS) have developed an interim solution to improve the quality and completeness of race and ethnicity data. This solution will be assessed within PHS to evaluate the effectiveness and determine requirements for a long-term solution. Research Data Scotland (RDS) have also developed an equality protected characteristics data set. A proof of concept study will be undertaken to evaluate the use of this dataset and public engagement will be undertaken before it is made available for wider research purposes. This dataset will be key to enabling researchers to build evidence on the outcomes of inequalities.
• Data Ethics – The Scottish Government published two reports on public attitudes to data use (Public dialogue on the use of data by the public sector in Scotland - gov.scot) and data sharing (Public dialogue on data sharing outside of the public sector in Scotland - gov.scot) in August 2024. Public dialogue on the use of data by the public sector in Scotland - gov.scot sets out ethical principles that should be adhered to when accessing public sector data and we continue to encourage the use of ethical frameworks and guidelines to build trust and transparency and ensure that data is being used in an ethical manner. Further public consultation work is underway by RDS to further develop the Private Sector Operational Framework following these findings. Additionally, RDS have undertaken public engagement on various research projects and system changes with the Scotland Talks Data Panel that consists of members of the public from different backgrounds across Scotland. The panel discuss research projects and topics such as what type of data should be used and how it should be processed and communicated in a manner that maintains public trust. More information is available at Public panel | Research Data Scotland. Animations were also published to help people understand how data can be used for research: New animations launched to explain data topics.

Priorities for 2025:

• Improving Protected Characteristics Data – We will continue work to improve protected characteristics data, focusing on implementing a long-term solution for the recording of race and ethnicity data which will be complete by Autumn 2025 which will allow us to consider use of CHI for storing wider protected characteristics data. As we continue work to improve protected characteristics data, we will consider how to improve the quality and completeness of sex and gender data. By Autumn 2025, a proof of concept on the protected characteristics dataset will be underway.
• Data Ethics – At present multiple ethical frameworks exist and Scottish Government and COSLA continue to encourage their use. However, Scottish Government are scoping out the feasibility of developing an interactive map to support people to identify the ethical framework which is most relevant to them.
• Public Engagement – The Scottish Government and key stakeholders will undertake engagement with the public on the use of GP data. Additionally, a pilot will be undertaken to explore the use of technology to scale public participation which will help to build public awareness, trust and transparency in relation to the use of health and social care data. RDS will continue a programme of public engagement work to develop the Researcher Access Service in a way that addresses public priorities and concerns.