Health and social care: data strategy

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.

Background

Ethical principles and approaches to data are well documented^[1]. The Scottish Government, along with partners, has considered the ethics of data use throughout COVID-19, with a set of ethical values and principles developed to support the use of public data in managing the pandemic. We believe these principles will provide a solid foundation for our use of health and social care data.

This approach is further articulated in the work of the Ethical Digital Nation, a report which recognised that public trust in the way we use health and social care data is essential. To ensure this trust we must embed an ethical, open and human rights-based approach to using data, themes we explored ahead of developing this Strategy with the public through our Data Dialogues. Additionally, the Caldicott principles form an important part of the ethical governance of health data. The Health and Social Care Standards provide this for social work and social care.

Where we are now

In addition to the extensive engagement work undertaken in the development of this Strategy, we continue to explore the priorities, ideas, perspectives, and issues of importance to stakeholders. This includes:

• Public engagement to explore and understand public awareness and views on ethics and the use of data.
• A specific programme of ‘Digital Citizen’ public engagement in partnership with The Health and Social Care Alliance Scotland and Young Scot.
• Bespoke engagement on specific related workstreams such as the Digital Front Door.

In addition to our own engagement work, we are aware of significant activity that will also help inform our approach and future priorities. For example, in October 2022 ADR UK in collaboration with Office for Statistics Regulation (OSR) published a UK-wide public dialogue exploring what the public understands as ‘public good’ use of data for the purposes of research and generation of statistics.

Closely linked is wider work on digital participation and inclusion, conducted as part of the Digital Strategy for Scotland and recognised as critically important for the health and social care sector in ‘Care in the Digital Age’. Ultimately, people will not be able to maximise their use of data if they are unable to access, or cannot meaningfully use, digital technology. A key strand of this is initiatives like the Connecting Scotland programme. The Scottish Government will continue to invest in digital inclusion, enabling as many people as possible in Scotland to interact with their health and social care data digitally, where they wish to.

We also acknowledge that data also has the potential to exacerbate existing inequalities in our health and social care sector. We recognise the need to collect and analyse data intersectionally in health and social care because inclusive data is intersectional. We will be transparent and use consultative methods when considering new methods of collecting and using data because we know that people who make analytic decisions about data are often not the people whose lived experience is represented in the data. Privacy, particularly of protected characteristics like ethnicity, will be treated sensitively to prevent bias or discrimination. We will assess the fairness and impartiality of data processes and work with experts in systemic racism, disability, and social policy to ensure appropriate analysis, and to mitigate bias and discrimination. Scottish Government has accepted the recommendations of the Expert Reference Group on COVID-19 and Ethnicity and will be taking forward specific actions to address them.

Where we want to be

The principles for the collection and use of health and social care data must be:

Beneficial: Start with a clear articulation of need, public benefit, and risks.

• We must articulate and show evidence of how using certain data is to benefit the individual or group, and relates to the quality and impact of services received. And be assured that the public recognise the same risks and benefits.

Responsible: Recognise the need to behave in a trustworthy way with the use of data and digital technology across systems and processes.

• We must reach a balance between the benefit of collecting personal or sensitive data to provide personalised health and social care services, while protecting an individual’s rights.

Accountable: Be accountable and transparent to independent scrutiny and oversight, use reliable practices and work within our skillsets.

• We must demonstrate accountability and provide evidence that we are adhering to these principles to members of the public and outline the governance groups that have oversight, and are accountable for the ethical use of data.

Insightful: Our health and social care data contain insights that can help us improve services. However, we must identify where there are limitations in the data and digital technology being used, and recognise unintended bias, while identifying and ensuring that approved mitigations are in place.

• We must be honest about the make up of the datasets we use, what flaws may exist, the level of quality, and any bias that may be present – and how this can be addressed.

Inclusive: Ensure that data is accessible in formats that are appropriate for everyone, and that access to data is not limited to digital means.

• To ensure that we are truly inclusive in our approach to giving access to data, we must clearly communicate that digital access is not the only way to gain access to your health information. We commit to providing comparable ease of access for those without digital means and those with digital access.

Necessary: Identify reasonable and proportionate requirements to meet the need.

• We must clearly articulate the ethical rationale for collecting and using data sets.

Observant: Implement all relevant legislation and codes of practice.

• We must clearly demonstrate the legal basis for collecting, storing and analysing data, showing that it is in line with legislation and codes of practice.

Widely Participatory: Embed the view of the public, through the routine use of public participation and co-design.

• We must identify the key points at which the public and or representatives of the public should be engaged. Public engagement should be transparent and open to scrutiny, showing how people’s views will be incorporated and where possible, how we can co-design our approaches with them.

These values will guide the collection, storage and use of Scotland’s health and social care data, no matter the setting or individual interacting with the data. A bespoke approach to each case is required, ensuring that the level of scrutiny applied is appropriate to the situation presented.

We know that some opportunities have the potential to revolutionise the way we deliver health and social care. They may also require a greater degree of scrutiny and have ethical challenges specific to that technology to consider. For example, AI technologies present unique challenges^[2].

Ethical approaches to data are core to each of the other seven priority areas of this Strategy. As such, our commitments to ethical working are set out in the introduction to our Strategy and underpin all other commitments in this Strategy.