Anonymisation and data in clinical research

The covid-19 pandemic has accelerated the use of clinical data in research and health system management. This inevitably raises questions on the security and privacy of sensitive data. One evolving aspect of this debate is the role played by anonymisation – the extent to which data can really be de-identified, the control patients should then have over its use and the regulatory framework required. As the UK looks to publish its data strategy for Health and Social Care, policymakers are actively considering these questions and updating their guidance to reflect the ever-evolving landscape.

They discussed:

• What is anonymisation and how does it work?
• What information governance challenges arise with clinical data; how are organisations such as the NHS and the Information Commissioner’s Office responding?
• How are technological advances influencing the policy debate and the scope for using data in operational management and clinical research?
• How should policymakers engage with the public and patients to provide reassurance on privacy and security?