Abine, Adam Tanner and Big Data: Who knows your medical history?

book-cover

Many of us have friends or family with serious medical conditions—or cope with our own medical conditions—be it mental health, cancer, or other conditions.  What many of these people who visit doctors may or may not know, is that data about their medical records and conditions is being bought and sold to data brokers like IMS Health (among others) for a profit. 

Most people don’t realize that their personal medical history data is being bought and sold, and the truth is, we don’t even have the choice whether or not our data is shared with data brokers.

This exact topic is one that’s covered heavily by author Adam Tanner in his new book, Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records. Adam is also the author of What Stays in Vegas: The World of Personal Data – Lifeblood of Big Business – and the End of Privacy as We Know It, which covers many of the same topics in a slightly different light.

Last week, we got the chance to catch-up with Adam, and he let us pick his brain for a little while.

“Anonymized” vs. “Identifiable” Data

Adam Tanner, author of Our Bodies, our Data

Adam Tanner, author of Our Bodies, our Data

One of the key points that Mr. Tanner addresses in his book is the differentiation between “anonymized” vs. “identifiable” data. Since the introduction of HIPAA (Health Insurance Portability and Accountability Act) in 1996, health records have been sold to data brokers containing “anonymized data”, which is simply health record data with its unique identifiers removed (e.g. name, social security number, address, etc.…).

Because this data is “anonymized”, medical patients have no say in whether or not their data is shared with data brokers. In most cases, as Mr. Tanner explained, even the medical professionals are generally not aware that data about their patients is being sold to data brokers.

Although this data is mostly “anonymized”, when cross-referenced against other information databases, it can be used to build a health record about you, which can then destroy the data’s anonymity. One of the most prominent examples of this data “re-identification” was written about by Tanner himself, when the former Governor of Massachusetts was re-identified from his anonymized medical data. So, this risk is real, and in our opinion growing as the scope and sheer amount of data collected about individuals continues to grow.

Implications

One of the most controversial issues behind the buying and selling of consumer medical data, is the potential for prejudice, and the resulting lack of opportunity for those being judged based on their medical history.

In a world where big data is controlling billion-dollar business decisions, and where China is already moving towards giving citizens a “social credit score”, it’s not farfetched to believe that health insurance providers—or worse, potential employers—could be making business decisions based on your medical history, or your web searches about potential medical conditions.

Although highly illegal today, it’s a terrifying thought to live in a world where you would be unable to get health insurance—or get denied a job—because of your personal medical history.

medical-appointment-doctor-healthcare-40568

Health Data Paradox

One interesting idea that was discussed with Adam last week was the Health Data Paradox. The paradox being this: there is all of this anonymized patient data that’s being bought and sold around the world, yet it’s extremely difficult for medical patients to receive an electronic record of their medical history. On top of this, medical professionals do not have any sort of electronic central database to access medical records when treating patients.

Some fitness tracking devices offer a starting point for health coverage providers to deliver some sort of “health dashboard”, but existing products don’t have a way of tracking your day-to-day health, nor a way of communicating with your doctor’s office. Looking at the industry’s history, the future doesn’t look so bright when two of the largest tech. companies in the world have basically failed trying to create a centralized health portal (think Microsoft and Google).

The Obama administration spent $30 Billion trying to digitize medical records so that we could one day achieve the goal of a centralized electronic medical database. While many practices were able to digitize records, there is not one centrally mandated health record software provider, thus resulting in a disparate, fragmented and un-centralized system.

Conclusion

Unfortunately, people get sick, we get hurt, we fall ill, and we’re required to seek help from medical professionals. These medical professionals, knowingly or not, are selling patients’ medical data to data brokers. While this data is mostly “anonymized”, when run against other information databases, it can be used to build a health dossier about you, which can be connected to the rest of your online life.

Medical patients don’t have a choice whether or not their medical data is shared with data brokers. Although many people do not have any issues with this kind of data being shared, individuals should, at the very least, have an option to “opt-out” of their medical data being bought and sold.

While the sharing of certain kinds of data may be out of our control, you can still gain control over the identifiable data that is put out there about you. Abine’s Blur allows you to block nosey tracking cookies so they can’t follow you from site to site when surfing the web, and it even allows you to create disposable email addresses or one-time-use credit cards (all in a few clicks) when you feel concerned about giving out your real identifiable information online.

Abine’s DeleteMe service works to remove your personal information like your name, address, phone number, etc., from some of the leading data broker sites on the web, like spokeo.com, intelius.com and beenverified.com, to name a few.

Some data sharing may be out of your hands, but we can help control as much of the identifiable data as possible.




12 comments shared on this article:

  • Mike says:

    My account isn’t working – i can’t even use the feedback form on your site i get this
    There was an error on our servers. Please try again or check our server maintenance announcement page.

  • Anonymous says:

    Very interesting and VERY scary article. I will be getting Adam’s book, for sure. I do a lot of medical research as a freelancer and yes, I have Blur Premium. However, I did not know Delete Me apparently is another service. I was under the belief that Blur did it all. Anyhow, the bottom line is in this day of ever evolving technology, there is nothing “sacred”(private) and it’s getting out of control. I worked on building two federal government databases beginning in 1972 as well as did work on HIPAA and have watched the nightmare it has become. I brought up my security concerns, even back in the early 70’s and was assurred “nothing you are projecting can happen”. Guess what? Also, I was nicely asked to leave the HIPAA group as I was too negative over my concerns about security. Despite all the procedures written as to who has access to what, over time, it all fades to Black. It has and sadly, all I predicted has reached fruition and worse. Thanks for the article.
    Linda

  • Dontneedaname says:

    I have already read Tanner’s book and found it to be disturbing and frightening. We have already lost control over the most intimate details of our lives. Everything we say or do, including everything we say to our doctors, is public record.

    This situation makes me want to live off the grid where I can get away from technology, corporations and the government.

    On a more personal note, I was treated at a top cancer for an early stage cancer. I was told by my doctors that my medical information, including pathology reports and genetic tests of my tumor, would be made available to researchers around the world, whether I liked it or not. Apparently, they even take tissue samples from your tumor and sequence the DNA to learn more about it. This is placed in a large database for comparison with other patients’ DNA.

    In addition, clinical researchers here collaborate on research with doctors from around the world who have access to your medical records and even sometimes “shadow” your doctor (i.e. come into your appointment to observe) all without your permission. I have had two foreign doctors come into my appointments and at this point, I have complained and said that if any others try to come in, I will throw them out unceremoniously.

    This is what the world has come to, and given the profits involved and the mindset of the Trump administration, things only going to get worse.

  • Vicky Soni says:

    data security is a big concern and how they can sale our data without our permission.

  • Thanks for sharing the information which is good for me and others also,

  • This situation makes me want to live off the grid where I can get away from technology, corporations and the government.

  • skype login says:

    Although this data is mostly “anonymized”, when cross-referenced against other information databases, Really ?

  • Last week, we got the chance to catch-up with Adam, and he let us pick his brain for a little while.

  • This is very important to know about your medical history or you must visit the doctor to get regular check up

  • I think medical history is so vital to know every body

Leave a Reply

Your email address will not be published.

Comment