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92% of People Say No to Sharing Private Health Data, Governments Do it Anyway

By: , Posted on: September 18, 2015

A new survey reveals that the vast majority of adults don’t want their health data to be shared with private firms, yet this is precisely what both the UK and US governments are doing.

The survey, from consultancy firm KPMG, looks into consumer attitudes towards sharing their health data, and finds that only 8 per cent of respondents are happy for their private health data to be shared with and processed by private firms.

This low figure is unsurprising, after all, most of us don’t mind health organizations knowing our most intimate details when that information is used directly for our healthcare, but when it’s being used by an insurance provider for the purposes of increasing their profits, most reasonable people are suddenly less willing to share.

But in the UK the controversial care.data scheme aims to do just that – share individuals’ personal data with private firms in order to generate revenue. When it was first launched the program was beset by a host of problems chiefly related to the fact that it did its best to obfuscate what would really happen to patient data, and deliberately made it hard for the public to opt out. According to medical privacy campaign group Med Confidential, the initial leaflet sent to the public to inform them about the scheme was designed to “manufacture consent.”

And even worse, the leaflets made it sound as if opting out of care.data would also prevent patients from receiving healthcare and would be de-registered from their local doctors’ surgeries. Grilling Kingsley Manning, the chair of HSCIC, the body behind care.data, Member of Parliament Barbara Keeley said the form made it “look like a threat if you opt out.”

And things are little better in the US. As I wrote in my book ‘You: For Sale – Protecting your personal data and privacy online’, The Affordable Care Act (also known as Obamacare) has come under scrutiny for its effects on privacy. In particular, visitors to the HealthCare.gov website, where US citizens go to arrange their health cover, can be tracked by commercial companies.

These companies can uncover details like the visitor’s age, income and ZIP code on top of certain medical data including whether the individual smokes or is pregnant. And in the age of big data, once you have just a handful of data points, it’s relatively trivial to find out the rest clearly identify an individual.

These are essentially the same issues on both side of the Atlantic. Our most private information is being harvested and sold without our consent. The care.data program may currently be paused while HSCIC attempts to improve the wording and processes around opt outs, and the US government may have scaled back the data it provides to private bodies from the HealthCare.gov site, but you can be sure that intentions to profit from your healthcare information is alive and well.

To read more about these issues, and many more serious privacy violations which are still happening today to anyone who uses a mobile phone or a computer – or even visits a supermarket – check out my soon to publish book, You: For Sale – Protecting Your Personal Data and Privacy Online.

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Use discount code “STC215” at checkout and save up to 30% on your very own copy!


About the Author

stuart sumnerStuart Sumner (Twitter: @StuartSumner) is a journalist, writer and broadcaster. He has written for and edited a number of both business and consumer titles, and specializes in technology, security, privacy and the law.

He has a bachelor’s degree in law but escaped the glamour of a legal career for the glamour of sitting alone typing in a darkened room.

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