NHSX: Privacy of Unstructured Data
Maintaining the privacy of patient data through anonymisation of unstructured data
The NHS collects and stores vast quantities of structured and unstructured patient data, which, when utilised downstream in research and analytics, provide insights to support evidence-based decision-making and move towards the goal of a more efficient healthcare system.
The Butterfly Challenge
The NHS faces challenges in utilising unstructured data (e.g., free-form text fields) for analysis due to privacy concerns and therefore required a capability to assess the considerations and issues surrounding the process of de-identification while retaining its value.
They contracted Butterfly Data through ACE to help them understand the basic principles and the next steps for the NHSX Analytics Unit in developing a robust, holistic approach to maintaining the privacy of patient data.
Developing Best Practices for Anonymising NHS Data
To address the challenge, Butterfly Data conducted research and analysis through interviews, written insights, and a workshop with experts in anonymisation, de-anonymisation, and health data.
This provided a collective perspective on current best practices, from which a set of principles and guidelines was developed.
These principles focused on the technical aspects of anonymising unstructured data within NHS Trusted Research Environments and included considerations for potential technical attacks.
The project also addressed consent and data protection issues but only when articulated in technical terms.
The project successfully delivered a report that provided guidance on the process, principles, and qualities that could serve as a minimum requirement for any tool or process used to anonymise unstructured data within the NHS.
This report laid the foundation for understanding privacy requirements in free-text data and informed the development of future tools and processes to manage privacy risks effectively.
