Health Policy

28.01.20

Health data sharing and public trust still uncertain, research finds

Experts from the University of Manchester have published a report on digital trust today (Jan 28) outlining that NHS, government, universities and companies must work harder to protect health data and maintain public trust in health research.

There has been a recent push in public services to use more and more digital services to store data, and despite the NHS having used electronic health records in GP practices for more than 20 years, data is increasingly being stored across all parts of the healthcare industry.

Public trust around health data sharing is fragile and complex, Professors John Ainsworth and Niels Peek held two citizens’ juries to gain a better overview of public perception on reusing NHS health data.

The Juries were asked the extend that patients should control access to records for secondary use and to evaluate eight scenarios of reusing health data for private gain.

After the experiment, public perception seemed more accepting of data sharing but suspicions were still apparent.

Co-author Professor Niels Peek 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.”

Professor John Ainsworth said:

“There’s no question we need to maximise the rich, comprehensive resource that correctly used NHS data can provide and how it can be maximised for the benefit of all.

“It can help us improve healthcare services, understand diseases in populations and assess the safety and effectiveness of treatments.

“But health is an intimate area of personal life and few people feel comfortable with the idea that strangers can see their health record.”

The publication recommends three core policy principles for the reuse of healthcare data, these are transparency, communication and maintaining the social licence with the aim of achieving ‘no surprises’ when health data is used for purposes beyond direct care.

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