NHS data has potential beyond health care – but who should have access?

As it stands, the NHS database holds records of around 65 million people that go back decades which is drawing the attention of private businesses, as reported by The Guardian. Julie Simmonds, a healthcare analyst said to The Guardian: “[digitalised data] is very valuable for pharma company. Real world data is better than clinical data.”

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

The experts published a report in January 2019 where they highlight the importance of Data privacy. The problem identified is that the same electronic health records used in GP practices by the NHS is being used in hospitals, social care, dentistry and other parts of the health care system.

Recently, there have reports of incidents that have revealed the complexity of understanding public trust around the concept of health data sharing, such as care.data and Google Deepmind.

Professor John Ainsworth and Niels Peek set up two juries of citizens to understand the public perception of using NHS health data for purposes beyond those of health care.

The first jury was asked to what extent patients should control access to patient records for secondary use. The second jury was asked to propose eight scenarios for reusing health data from improving health service to its use in the private commercial sector.

The jurors seemed to be more accepting of data sharing to private and public sectors after the exercise, however some were still suspicious.

Despite the potential benefits of maximising the rich NHS resource, Professor Ainsworth pointed out that, “health is an intimate area of personal life and few people feel comfortable with the idea that strangers can see their health record.”

However, problems arise when data is shared, even to other medical sectors due to the increased risks of potential misuse. In fact, the overwhelming data held by the NHS is of interest to private businesses, and the pressure on NHS funding is increasing drastically. Therefore, as the interaction between the two sectors develops, this poses controversial problems which can severely have an impact on data protection at the public’s dismay.