Re-think health data sharing, publication urges

Experts from the University of Manchester have stressed that NHS, government, universities and companies must do more to avoid misusing health data and damaging public trust in health research.

The NHS has used electronic health records in GP practices for more than 20 years, which are kept from cradle to grave. However, increasingly they are also being used in hospitals, social care, dentistry, and other parts of the healthcare system.

In recent years, there have repeatedly been incidents that revealed the complex nature and fragility of public trust around the concept of health data sharing, such as care.data and Google Deepmind.

Professors from the University of Manchester held two citizens’ juries to understand the public perception of reusing NHS health data for purposes beyond direct care. In one, the juries were asked to what extent should patients control access to patient records for secondary use, whilst in the other they were asked to evaluate eight scenarios of reusing health data from improving health service to use to for private commercial gain. The Jurors tended to be more accepting of data sharing to private and public sectors after taking part, but some were suspicious.

Niels Peek, co-author of the publication, said: “The NHS number provides a unique identifier for each citizen which can be used to link data from different databases together, providing a rich, comprehensive source of real-world evidence. So the question is, how can we maximise this resource for the benefit of all while maintaining the public’s trust.”