Data brokers are trading your Health Information

“I usually buy my groceries at Sainsbury’s but only because it’s on my way home I don’t care for cars or own one I don’t like any form of housework and I have a cleaner who lets herself in while I’m at work on Fridays you’ll find me at the pub after work at home I’m far more likely to be browsing restaurant reviews rather than managing my finances or looking at property prices online I like the idea of living abroad someday I prefer to work as a team than on my own I’m ambitious and it’s important to me that my many thinks I’m doing well I’m rarely swayed by others views this motley set of characteristics attitudes thoughts and desires come very close to defining me as a person it is also a precise and accurate description of what a group of companies I had never heard of personal data trackers had learned about me…

…in 2014 when I became curious about the murky world of data brokers a multi-billion pound industry of companies that collect package and sell detailed profiles of individuals based on their online and offline behaviors… …I discovered that online anonymity is a complete myth. Particulars such as your postcode, your date of birth and your gender can be traded freely and without your permission because they’re not considered personal but pseudonymous in other words they can’t be traced back to you without the need for additional information so why does it matter if a bunch of companies you’ve never heard of know your age or your postcode you may think. Well it matters quite a lot about a decade ago Latanya Sweeney a professor of privacy at Harvard University proved that about 87% of US citizens could be uniquely identified by just three facts about them their zip code their date of birth and their gender in the UK where we have far fewer citizens serviced by much longer postcodes that probability is far higher Professor Sweeney proved this in a rather cheeky way when William Weld a former governor of Cambridge Massachusetts in the US decided to support the commercial release of 135,000 state employee health records along with their families including his own these records did not contain a name or a social security number but did contain hundreds of fields of sensitive medical information including drugs prescribed hospitalizations and procedures performed on these employees. For $20 professor sweeney purchased the voter records for Cambridge Massachusetts containing the names zip codes dates of birth and gender for every voter in the area and then cross-referenced this with their health records and within minutes she had pinpointed governor Welds own health record. Only six people in Cambridge shared his date of birth three of them were men and he was the only one living in his zip code. Professor Sweeney sent the governor his health records in the post…

…it’s not just large companies digging into your life it’s free apps and small startups as well I realized on my phone that every time I logged fitness data into the app Endomondo it was sharing my details including my location and gender with third-party advertisers. WebMD a symptom checker app was sharing even more sensitive information including the symptoms procedures and drugs viewed by users within its app with its third parties. Fitbit was sharing data with Yahoo. A pregnancy tracking app was selling on information about its users ovulation cycles and fertility cycles with people or advertisers…   …in 2015 Samsung was found to be recording people in the homes as they’d been sold TVs with voice recognition systems…

…that sinking feeling of being watched is not unique to me there have been several anecdotal reports of people being shown adverts based on things and conversations they were having in real life prompting concerns that Facebook and Google are eavesdropping on people via their personal devices to piece together what all these companies knew about me I spoke to a data profiler called iota. iota uses cookies to assign me to thousands of different categories including my job how many children I have and whether I’m likely to buy Star Wars memorabilia they don’t know my name but they know more about me than my neighbours do. iota also buys information from third parties such as the credit rating agency Experian which amasses a massive database of 15 different demographic types and 66 lifestyles all based on people’s post codes…

…in 2014 Ross Anderson a professor of privacy and security at Cambridge University found that the NHS had been sharing its hospital’s database which included details of hospitalizations for every citizen in Britain with the Institute and faculty of actuaries a body that was researching how likely people are to develop chronic illnesses at certain ages. Of course this resulted in an increase in health insurance premiums as the amount of data that is collected increases exponentially it becomes much easier to identify you for example your Fitbit measures your heart rate or your gait patterns and these can be used to estimate things like your height your weight or even your gender these are details that are very hard to mimic or change…”

I think this excellent TedxTalk by Madhumita Murgia (European Technology Correspondent at the Financial Times) explains how the BornMobile generation are slowly waking up to how information about them is being traded between tech companies and brands that are pretending to be in the healthCARE business.

It really makes you wonder why Google even needs the NHS to give it the private medical records of millions of Patients and helps you understand why Apple’s CEO thinks the mHealth opportunity isn’t in targeting reimbursement from insurance companies.

I think it’s also a good reminder why inexpensive documented video consults with independent impartial Doctors make sense for Patients. Sure you can have a FREE* Video Consult with a Doctor paid for by a company that makes billions in profit every year selling information about you to other companies, similarly you can have a  FREE* Recorded Telephone Chat with a Doctor paid by a health insurance company that might want to use that information to increase your future premiums or deny you coverage but it’s probably not going to be the brightest idea you ever had and you might want to reconsider who else you’re inappropriately placing your trust in.

I think we’re a few years from a Communities Dominate Brands reset in the market but it will come and it’s increasingly going to be insulting to underestimate Patients interest in the respectful use of their data.

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About David Doherty
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