NHS, government, universities and companies must do more to avoid misusing health data and damaging public trust in health research, say experts from the University of Manchester.
The call for higher data security set out in a series of expert analyses on digital trust by University of Manchester academics published in a report today to highlight Data Privacy.
The NHS has used electronic health records in GP practices for more than 20 years, which are kept from cradle to grave.
But 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 John Ainsworth and Niels Peek held 2 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.
And 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.
“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,” said co-author Professor Niels Peek
“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.”
Dorothy Byrne, Head of News and Current Affairs at Channel Four who also contributed to the publication said:
She said: “We need excellent publications like this to alert us to the risks, to inform us about the massive benefits to our health and lives which harvesting data can bring, and to feed into thinking about how we can regulate so that we control our futures.”
TOn Digital Trust is availanle here