What Happens to Health Data: A Guide to Large Datasets offers both a guide and video explaining how health data is gathered, stored, and used within the NHS. This resource is designed for patients, carers, and the general public, showing the processes and benefits of using large health datasets.
It aims to address common questions about health data usage and to explain key terms related to large datasets, such as anonymisation and pseudonymisation. It covers themes such as data collection, storage, usage, and the potential benefits and risks associated with large health datasets.
It also provides additional features, such as animations, social media graphics, and a poster to help with outreach and engagement on the topic of large health datasets.
This is a useful resource to help patients and public understand how their health data is used, ensuring openness and building trust in the processes involved. Supporting PEDRI’s Good Practice Standard 3: Two-way communication.