Monday, September 19, 2016

Help Preserve Our Privacy-Data Selling for Profit Epidemic |

It is your data, but are you sharing the profit ?


Each time I check my mail or bank statement I do not see any deposits coming from my health insurance company or hospital for the moneys they earned from selling my data, anonymized or not. This information is becoming more commonly known.


The larger question is it  still your data if your identifying information has been removed? Apparently so,  as this challenge has been rebuffed by powerful corporate interests. Profiteering from a sick or well person's data is now acceptable business practice.

This story is curated from an article by Barbara Duck in You Caring


The Story

I am an active consumer advocate and write about our data being sold frequently and we don't know to who, what kind of data they sell, and how it will impact us. We need a law to require all who sells data in the US to buy a license and disclose what they sell and to whom. Here's the reason why...(Think Anthem Breach)

This call was different as the caller proceeded to tell me that their records indicate that I am one who takes blood thinners.  They also had my name and address information which they disclosed at the beginning of the call.  So what's the problem here?

I don't take blood thinners, never been prescribed any and have not taken any in my life!  

Where did this information come from?  It was derived by the data sellers on the internet piecing together information they mine and some algorithm determined with making this match that "I take blood thinners"!  This is enough to make anyone mad as hell!  It made me mad as I used to be a data base person that did this kind of work too.  I have a pretty good idea on the data mechanics here.  

Now we hear that the hackers of Anthem came from China, do you want your records sold all over China and the US?  That's why they hacked to get data to sell, period.  Hackers can repackage our data, hide the original formats and bingo they have a money maker.  When this happens and being there's no licensing attached to identify origins, well companies will end up buying stolen data at some point, why we need licensing!!  Here's the rest of what happened to me..

Long and short of this, my data has been sold and I have been repackaged and who knows how many other places have this "flawed data" about me on file?  I'm not one who has ever taken blood thinners and I have no way to fix this.

I have no way to find who did this to get it corrected and remember this is all on my own dime and time too!  The data sellers don't care as flawed data gets the same price as good data, so I'm screwed and can't remove this and I don't know where and when it will appear again and I'm mad.  My hands are completely tied and I can't fix this.  This is why we need an index for this.

I have no way to find who did this to get it corrected and remember this is all on my own dime and time too!  The data sellers don't care as flawed data gets the same price as good data, so I'm screwed and can't remove this and I don't know where and when it will appear again and I'm mad.  My hands are completely tied and I can't fix this.  This is why we need an index for this.

Who in the hell are all these data sellers?  

Now when people do research about me to find what's on the web, I have no clue when this will pop up again and it will at some point, depends how many bought this information about me.  So I go apply for a loan as an example and guess what "I'm a person that takes blood thinners" shows up.  

With all the extensive data searching we do today, this person who could be the one approving the loan will see this!  What could be their next move?  Easy, look and purchase more data about me, like get an actuary report from another data seller that shows the risk of how long they think I will live!!  This happens folks and this an example with me here but it happens.  

So depending on what comes back if my risk of not living long enough has impact, well guess what, I get no loan.

More about other matters:

Here's some additional reference and information with more details about how this works against us with privacy and no transparency....

Did you know you are "secretly" scored? What is a score? Well think back to school if you will and remember how you were graded, and this is happening all the time today, but it's not a test you are taking to get scored, companies and buying and selling your data and you don't even know it. Worse yet, when there are errors, guess what, the score is wrong, but you have no way to even know you have a flawed score out there that people are using to make some kind of decision. 

Did you know that when you call most insurance call centers they are "scoring" your voice?When you hear "this call may be recorded..." what's really occurring is that millions of computer algorithms are listening to you and determining what your current state of mind is. You can read more here about how that occurs and the software used. 

Do you know that health insurers are buying your Visa and Master Card records? They sure are and those too are analyzed and used along with other data they may have on file about you. This is becoming more common practice all the time. They could be doing that, but they have a lot more than just clothes purchases and could be looking at anything including your grocery bill, and so on.  

Do you want your health insurer to know everything you buy and scrutinize it? You can read more here about how that works. 


There really are few ways to track your information once it  goes into a  server either cloud based or in your office. The cost of insuring your privacy is considerable and is another addition to health care costs.

The over-riding weakness of the system is that all of the data resides in one place (or more) It is not compartmentalized and a simple breach can result in massive data exposure.



Help Preserve Our Privacy-Data Selling for Profit Epidemic | Other - YouCaring
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