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)
I'm adding some updated information here as now, out of the blue this is impacting my life. I received a call soliciting me for a clinical trial, and it was an offshore call to boot with the accent, asking me if I wanted to participate in a trial. Well we get thos calls from time to time with phone bots calling us all the time. They are annoying for sure.
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.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.
This is huge and a big discriminatory practice against consumers and it's all about "making money". There are legitimate reasons of course to get some background information about us, but a lot of it is secret as well as the companies who "score" us and produce it. So in this example I'm screwed and have no idea who "scored" me at all. This should be transparent so we can react, but we can't as they all want to keep all of their methods a big secret!! This has to stop as it is accelerating the growth of inequality in the US with denying access to money, loans, etc. you name it.
I write to the FTC and members of Congress about this frequently as without a tracking system, you too will be screwed if you can't find who's reporting flawed about you and this is growing. Data selling in the US is about a $180 billion dollar business where companies, insurers and banks build tremendously large files about us and use to score our behavior, what we do on the web, you name it.
It's not fair to be black balled out of opportunites, but this is exactly what's happening to people. They don't get jobs due to flawed data out there like this and have to hire lawyers to get flawed data fixed. Please consider helping me out here so we can get a solution if you will. I'm screwed as I will never know when this will pop up again and I have no avenues to fix it. Who ever originated the flawed data, well chances are they resold it too? To who, I have no idea, but I'm screwd whenever this flawed data about me, which is total lie shows up. Think Anthem data breach again....
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. Here's a hospital that's buying your Mastercard and Vista records and see what they are doing to judge you.
The doctors don't have time and are really not interested but administrators of hospitals are and once they have purchased this data and have it in hand, we don't know what else they might do with the information or how they might score you. You can read more here
on that issue.
My goal here is to help me help you and everyone else by working to get laws in place that will help protect all of us. I am already writing to members of Congress and the FTC on this and I need some help to keep it going, and there's nobody else pushing the "licensing" idea and how do you regulate if you don't know all the players are!Think of it this way when you get your hair done, that person requires a license so this is not out of the question. You need a license to drive a car so why should banks, companies, etc. not be required to have a license and disclose to us what kind of data they sell, and who they sell to. Walgreens as an example, making about $1-2 billion a year selling our data only, so just think of what a bank makes with credit card data.
Those distributing HIPAA covered data would have a separate license. Would it not be nice to be able to have a place to look up and see what kind of data companies and banks sell and who they sell to? Turn your phone off when inside a Walgreens store.
If we want any privacy in the US, this I see as step one as you can't regulate this industry at all without an index on knowing who the players are and this is why all privacy efforts have failed as nobody has taken step one. Even hospitals like Mayo Clinic are selling de-identifed medical records to Optum Labs (a subsidiary of United Healthcare)
so companies like Boston Scientific can pay and rummage through all of it to see if there's any information pertinent to the devices they manufacture and Mayo and Optum somehow split the profits from paying companies to mine the data. US “Data Selling Epidemic”-Privacy, mHealth and More Is Not Going Anywhere Until We Require All (Banks, Corporations, Insurers, Brokers, Etc.) To Buy A License to Distribute Data-You Need An Index Stupid To Identify Who to Regulate And Where…
With healthcare it's becoming more about your data and what they can do to score you than the quality of care today!
Anything small or large is appreciated! Follow my blog where I be post numerous privacy updates on my Medical Quack blog
as they come along.
If we don't have something soon on the books any company will probably be able to buy a copy of your credit card records just like they buy a credit report and there's a big difference between the two.60 Minutes
has done a good job documenting this as well. Listen to the lady who had to hire a lawyer and all the expenses she has incurred so far and it's still not resolved. When people are just looking at data, we know things can be read out of context easily.
This needs to be done with a license as you have seen all privacy efforts so far have failed as we have missed step one..who in the heck are they,
so licensing would helpf find them all and give us a reference of what kind of data they sell and to who. Watch the videos to the right!
One hopsital in Florida has had 3 data breaches in 2 years, all inside jobs, like Nurse Mildred in the Data Dealer Game. There's also a good interview with a doctor and his concerns. If hospitals don't pay help enough, well they all look for other means of making money and it's your data they go after! Please donate today!
We are under "The Attack of the Killer Algorithms....