Privacy Transparency Please

Help me help you. 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.

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. Does that make you feel uncomfortable? Sure, it makes everyone feel uncomfortable, me too. In addition, what do they do with that file when analyzed? Do they sell it, they could and we don't know. You can read more here about how that occurs.

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. Blue Cross when questioned, and you can't make this up said they were looking to see if they're insured were buying larger sized clothes so they could monitor obesity. 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. You can read more here about how that works.

Now in the news we have a hospital also buying your Master Card records and buying data from Acxiom, the largest data broker in the US and their intentions are to have a doctor review this data in addition to caring for you to see what you do, did you renew your gym bill, did you buy a candy bar, and what else is on that transaction record. Does a hospital need to see all of your charges you make on your credit card?

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. Once this starts, there's no stopping and the data can be flawed. Acxiom data on myself if flawed due to no fault of my own, but rather sloppy data matching and that happens all the time.  I had a little Tweet out with them too recently on that topic. 

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. 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.

In addition a lot of the healthcare information is covered by HIPAA and some of the security breaches we are having today is a direct result of data selling. Companies make big money and I can use Walgreens as an example, making about $1-2 billion a year selling 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?

So this is my purpose to keep this going and work to get a law on the books to give us that transparency as you have none at all right now. When information gets flawed and we need to do something to fix the "flawed data" these companies have profited and sold about us, we don't even know where to look or who sold what to who.

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. This is the key. There's a company, for example called e-scoring and due to the way they list themselves you can't see anything they sell, but they are busy selling types of credit data about all of us and make millions.

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. Here's another article I have written on the topic.

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…

What's happening is that in the health care side, it's more about selling data than getting us healthier as if you have read the news the US quality of care is declining and it's partly due to supporting the money being made buying and selling data. It's bigger than what you could imagine and you don't see it as it runs on servers 24/7.

Have you noticed how much easier it is to get a credit card? Well there's something subsidizing those who default and it's the money they make selling data that compensates for it and again it's your data and mine out there. I'm a former software developer and understand the "back" side of this if you will and that helps a lot as I can go where other can't with logic and following the money and the data. I'm in here too so I'm motivated. There are marketing reps from credit card companies actively looking for places and companies to where they can sell the data so this is not accidental it's marketed.

Anything small or large will help keep me going here as this is important and as well as here I will be posting privacy updates on my Medical Quack blog as they come along too.

So now I'm going to embed a video that was made to exploit the data selling epidemic that is also starting to eat up the economy too, as we wanted jobs to restore failing infrastructures and all we got were a bunch of algorithms that score use and deny access to money, care, you name it.   The video will wake you up if you are still here with me and here's their website as I should do since I'm using their video..they did a good job exploiting this. 



So again help me fight this battle and get a law in front of Congress and I'm working on it and it's been 3 years so far and it's getting closer.  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 couple stories on this as well and are worth watching and I'm not discounting their potential involvement if I can get it. 

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. 

I don't think you'll find anyone on the web screaming louder about this than me. Please feel free to pass this along to your friends as we are all in this together and I want to make a difference, one that will count this time.

Organizer

Barbara Duck
Organizer
Huntington Beach, CA

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