If your data is effectively anonymised in the eyes of the law…

Data that has been assessed to be effectively anonymised is not considered personal data. It does not present privacy and ethical risks.

That said, if you are using data that relates to NHS service users or staff and that is managed by an NHS care organisation, you will still need to seek approval by the Health Research Authority (HRA) in England and Wales or the authority of devolved administration equivalents.

However, your use of data does not require Research Ethics Committee (REC) because it is effectively anonymised.

A word of caution

By now you probably understand how complicated it is to assess whether data is effectively anonymised. It is your responsibility, together with the data provider, to do due diligence and make sure that assessment has been properly conducted.

As a reminder:

• If you are using an existing dataset, check with your data provider that the data has been assessed to be effectively anonymised; and that the way you will be using the data is in line with the way the data provider intended the data to be used.
• Keep educating yourself about data protection and privacy, using material from the Information Commissioner’s Office (ICO), including using the Data protection self assessment - ICO. This tool assumes you are using existing data for new purposes, and not collecting data directly from test subjects. If you are collecting data directly, you should seek guidance directly from the Health Research Authority (HRA)

Understanding the data requirements for your project is the first step in your research journey. This tool should have assisted you in thinking about the essential considerations on the use of data for health and social care research. Please do ensure that you think about the most appropriate data you need for your study and whether your data access needs would meet the statutory and legal governance requirements in the UK. It is imperative that data used for the development of AI and data-driven interventions is accessed with the highest privacy and ethical standards. Spending time to identify the data you need, understand what data is available and consult the relevant people and organisations, may ensure that your project can get started as soon as possible with minimal delays.

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