The exhibition challenging our perception of data sharing

Can of Worms is a free exhibition aimed at changing our perceptions around data sharing

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When you read reports that one in eight Brits have had their medical data stolen, that the NHS loses around 10,000 patient records each year and even private medical firms like Bupa have issues with retaining medical records, it’s understandable to not want your information to become yet another statistic.

Yet, being able to share patient data between NHS departments could greatly improve Britain’s healthcare system. If that data could then be anonymised and shared with research institutions, major advancements in patient diagnoses and development of potential cures could happen.

And yet, it’s not happening. At least, not quite as much as anyone would like. This is largely down to a cultue of fear around what data sharing really means. It’s also not inherently clear just what benefits sharing medical data will actually give.

People will download fitness tracking apps that share their locations, age, height, weight workout regimes, diets and routes. All of that information just gets syphoned off into a private company that’ll likely sell the data for ad purposes, instead of using it to change the world. Yet, it happens because people feel they’re getting a service in return for giving up all of that data. When it comes to the NHS or medical research institutions in the UK, many people feel wary of offering up the same level of information, despite the inherent benefits it’ll have to their lives.

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Convincing people of the importance of what data sharing means is no easy feat, but the folks over at the Helix Centre, an innovation lab associated with Imperial College London and St Mary’s Hospital, have taken on the task. As part of an interactive exhibit based at a pop-up space at St Mary’s Hospital, the Helix Centre is asking the public to open up the can of worms that is the messy subject of sharing healthcare data.

Aimed at challenging public perception on the matter, alongside hearing what their concerns around the topic are, visitors are invited to listen to stories of would-be patients who have benefited from a world where data sharing was commonplace. Presented in openable tin cans, you can listen to how an AI trained on anonymous patient data helped identify a misdiagnosis and save someone’s life. Or another story using data to bust the myths around breastfeeding or combat cyberbullying.

The Helix isn't biased in its approach either, outlining what the risks are in relying upon AI-driven diagnostics and the sharing of medical data. It’s designed to be an installation that sparks conversation around a tricky topic.

If you want to take a look at the Can of Worms event yourself, it’s running from Thursday 29 November to Sunday 2 December outside St Mary’s Hospital in Paddington, London.