Opinion: Communicators must help promote health data sharing

Opinion: Communicators must help promote health data sharing

Catherine Desmidt, associate director and head of the health practice at Hotwire, argues that communicators must help health practitioners explain how data sharing benefits patients.

Stories about data and how it is used or abused are consistently in the media. Big technology companies are being held to account over the security of data, whilst we, as consumers are being advised to be more cautious about how we share our data.

When it comes to health data, the issue is even more contentious due to the fact the information is incredibly personal and unique to us. However, unlike data about how we shop, travel or spend, sharing health data has the ability to lengthen and improve the quality our lives, be it through disease prevention, faster diagnosis, or better and more precise treatment.

Unfortunately, there have been a wave of negative stories about the use of health data. The care.data scandal in 2014 damaged public trust, leading to severe set-backs to the public’s willingness to share it.

Electronic health records (EHRs) have been slow to implement across the health service and doctors are still trying to work out how best to use all the unstructured data we have from new consumer devices such as health trackers and monitors.

The health data revolution

It does feel like change is coming; the new health secretary Matt Hancock recently pledged to invest more in digital health and we’re seeing new studies published around the use of data in hospitals – with positive effects.

From a communications perspective, we have a duty of care to the health industry. There are some fascinating success stories relating to data that need to be told, but framed in the correct way.

Despite the backlash, sharing data in the right way is something that will drive new discoveries and solutions in health. It will lead to better preventative care, faster drug discovery and a more joined up approach to patient care.

Companies like Benevolent AI use artificial intelligence to redefine how scientists gain access to, and use, all the data available to them to drive innovation and faster drug discovery. Other larger organisations like Roche are investing in companies who specialise in cancer data to better understand genetic patterns.

Communicating the benefits of data sharing

But even looking at data sharing in its simplest form provides benefits; for example knowing that the information your GP has about you is available to a hospital if you have to be admitted in an emergency, is crucial for better patient care.

If patients understand why it is important for them to share their data, and the message is communicated in an informative, transparent and positive way, it could help to rebuild valuable trust and lead to a more effective health system for us all.

We are constantly bombarded by negative NHS stories, and there is no doubt there are plenty of tough issues to be addressed and problems should be dealt with quickly. But, there are also stories about exciting technologies that we should be championing to encourage the spread of technological innovation and digital discoveries in the sector.

As communicators we have an important role to play in the future of the NHS and the wider health system.

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