An ethical approach to using care home data

1. Introduction

The data that is generated through the delivery of social care provides a wealth of opportunities for research and innovation. Research and innovation can improve our understanding of: care and support needs; the delivery of care and support; the development of new services; progress towards reducing inequalities of access, experiences and outcomes. However, these opportunities can only be realised if there are clear and timely information governance and ethical routes for accessing, collecting and using data appropriately. Information governance and ethical use of data are closely related. Information governance and ethics are some of the building blocks which underpin the Digital Health and Care Strategy^[1].

In this publication, we set out in greater detail the Care Home Data Review findings from our consideration of the ethical review processes for adult care home data for its use beyond direct care. Although this report has been produced as part of the Care Home Data Review, the report is applicable for adult social care data more broadly.

Data Ethics: An emerging branch of applied ethics that studies and evaluates moral problems and describes the value judgements related to data in order to formulate and support morally good solutions.

The aim of data ethics is to promote responsible and sustainable use of data for the benefit of people and society and ensure that knowledge obtained through data is not used against the legitimate interests of an individual or group while identifying and promoting standards, values and responsibilities that allow us to judge whether decisions or actions are appropriate, ‘right’, or ‘good’.

Source: Data Ethics Framework: glossary and methodology - GOV.UK (www.gov.uk)

1.1 Ethical Approach

The Health and Care Data Strategy^[2] sets out our ethical approach to using all health and social care data in Scotland. The Strategy states that “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”. The Strategy outlines the principles for the collection and use of health and social care data:

Table 1: Principles for data collection and use

• Beneficial - Start with a clear articulation of need, public benefit, and risks.
• Responsible - Recognise the need to behave in a trustworthy way with the use of data and digital technology across systems and processes.
• Accountable - Be accountable and transparent to independent scrutiny and oversight, use reliable practices and work within our skillsets.
• 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.
• Inclusive - Ensure that data is accessible in formats that are appropriate for everyone.
• Necessary - Identify reasonable and proportionate requirements to meet the need.
• Observant - Implement all relevant legislation and codes of practice (for example around the general ethical principles of informed consent, confidentiality & anonymity, avoiding harm to data subjects / participants and researchers).
• Widely Participatory - Embed the view of the public, through the routine use of public participation and co-design.

Source: Scottish Government (2023) Health and Care Data Strategy

Ethical approaches to care home data processing are core to all the Care Home Data Review recommendations and subsequent work programmes.

The following sections provide a summary of the role of ethical review and the current landscape in Scotland. It also highlights some of the challenges with the current infrastructure in Scotland specific to adult social care, before proposing recommended actions.

1.2 Role of ethical review

There are many types and uses of care home data in addition to data collected for the purposes of delivering care, as shown in the following diagram:

Infographic text below:

• Service Delivery and Planning
• Official Statistics
• Surveillance
• Service Evaluation
• Innovation
• Audit
• Research
• Regulation

This publication considers the role of ethical review for the care home data uses displayed in the diagram.

Within these uses, data can be collected at different levels:

1. Individual resident

2. Individual staff/workforce

3. Institution (care home)

4. Health & Social Care Partnership / Local Authorities / NHS Boards

Within these levels, data can be anonymised, pseudonymised or identifiable.

Pseudonymisation refers to techniques that replace, remove or transform information that identifies individuals, and keep that information separate.

Data that has undergone pseudonymisation remains personal data and is in scope of data protection law.

Pseudonymisation can bring many benefits. It can help you to:

• reduce the risks your processing poses;
• implement data protection by design and ensure appropriate security; and
• make better use of data.

Source: Extract from Information Commissioner’s Office (2022), Chapter 3: pseudonymisation, page 2

Collecting, analysing or linking data can sometimes involve a degree of ethical risk, and/or involve additional burdens or intrusions exceeding those involved in normal care”^[3] therefore, ethical review is required. Ethical review is a process which considers and assesses the ethical implications of a project. Depending on the nature of the project and the level of risk, additional burden or intrusion, approval of a research ethics committee (REC) is required (e.g. NHS REC, University REC).

Ethical review: “An ethics review must be proportionate to the potential risk or harm that the research imposes. Risks should be balanced against benefits and, where possible, risks should be minimised. Ethical considerations are different where there is minimal risk of serious harm, and moderate risk of minimal harm. These considerations apply whether the research involves primary use as well as the re-use of data”.

Source: Our expectations of ethics review – UKRI

Research Ethics Committees (RECs): “Research ethics committees aim to protect people who take part in research. This helps promote public confidence about the conduct of researchers and the dignity, rights, safety and well-being of research participants. As a result, more people will be encouraged to take part in research. This in turn leads to more, better and quicker improvements in health and social care”.

Source: GAfREC, page 3