Why you have a duty to share your health data

Whether it’s your heart rate, how much you weigh or how many grams of sugar you ate yesterday, thanks to wearable tech like FitBits and iWatches it’s never been easier to gather together essential data about your health...

It’s also never been easier to share that data with others. So it’s perhaps no surprise that alongside this newfound interest in our wellbeing, concerns about privacy are growing.

However, experts are claiming that worries about privacy are far outweighed by the potential benefits of data sharing for the health of the nation.

So do you have a duty to share your health data? According to digital health expert Dr Beth Seidenberg, the answer is most definitely yes.

"The de-identified data that you share is driving the most important advance in medicine: population-based data discoveries and tools to manage our health, wellness, and diseases," she explains.

"The next big breakthrough in medicine could develop because you shared your health information. All of us – patients, providers, and entrepreneurs – have a stake in making this happen."

Driving forward medical advances

Even before the arrival of wearable tech and health apps, the potential of gathering health data en masse had been realised.

With the vast majority of health records now digitalised, the NHS recently announced its care.data programme. By collecting anonymised data from patients across the country, the NHS aims to connect the information to better understand diseases, and develop drugs and treatments that can change lives.

Read: How is working long hours affecting our bodies?

It also wants to use the shared data to "understand patterns and trends in public health and disease to ensure better quality care is available to everyone, monitor the safety of drugs and compare the quality of care provided in different areas of the country".

So it seems sharing our personal data could be good for the nation’s collective health.

Is it safe?

But we live in an age where cyber attacks are becoming increasingly commonplace, which means there are real concerns about privacy, and questions over whether highly sensitive information about people’s health can really be kept safe.

For instance, in 2014 America’s health.gov website was breached by hackers and a separate cyber attack on a US hospital system accessed the data of 4.5 million patients.

Similar attacks haven’t yet occurred in the UK but revelations of top secret documents being left on trains and computer discs containing sensitive data being lost show how easy it can be for things to go wrong – and privacy to be compromised.

However, according to Dr Seidenberg, the value of sharing your data outweighs this risk – and it’s a view that many other commentators share.

We need mass data

Jonathan Freedland writes: "Small, clinical studies only tell you so much. Sometimes it's mass data you need. It was mass information that disproved the link between MMR and autism, or that spotted the connection between Thalidomide and birth defects, or between smoking and cancer.

"Ethically you can't conduct trials on pregnant women or children, so you're reliant on knowing what's happening in the population. If you can know that swiftly and at scale, you can act faster and more effectively."

Along with the feelgood factor of helping scientists make medical advances, there is also the potential for patients to benefit on a more personal level by sharing their data. Websites like PatientsLikeMe offer people the chance to connect with others who have the same illness to get treatment tips in exchange for sharing their data.

Whatever it is that persuades people to put aside their privacy concerns, the truth is that with diseases such as diabetes and certain types of cancer becoming more prevalent, the challenge for health professionals to find treatments and medicines that save and transform lives has never been greater.

Sharing your data could help with that. Nevertheless, whether to do so or not is a decision that remains as personal as the data itself.

This is a guest blog and may not represent the views of Virgin.com. Please see virgin.com/terms for more details. Thumbnail from gettyimages


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