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How Our Medical Data Gets Sold And Used

Digitizing Medical Records Comes With Costs And Benefits, Author Says
By J. Carlisle Larsen
Thursday, February 9, 2017, 4:15pm
Thursday, February 9, 2017, 6:15pm
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Our bodies are deeply personal. Our bodies are sometimes healthy and well. At other times they can be weird, hurt or do embarrassing things. It's part of the reason why doctor-patient confidentiality is such a cherished – and needed – part of the medical field. But there's a booming market — in the billions of dollars — for the anonymous data gathered on ourselves in the doctor's office. 

Adam Tanner, author of "Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records," said it's easier than ever for companies to gather and aggregate such information.

"With the digitization of medical records has come the ability to spread this information elsewhere," he said. 

Tanner said this isn't always a bad thing. The ability to quickly and digitally send records to other doctors, or write a prescription and send it a pharmacy instantly can make lives easier and more efficient. But he warns it's in these moments that data is collected.

"What is happening now is that many of these entities are selling this information about us to commercial data miners for use that's not related to your medical care," he said. 

The information sent by these digital companies doesn't have your name on it, which makes them mostly anonymous. But they do contain other pieces of data important to these companies, such as birthdate, gender and the area of town you live.

Over time, Tanner said these companies are able to create a medical dossier about you which can be used in a variety of ways, such as selling medications to doctor’s offices by pharmaceutical companies.

While individual pieces of data about you are technically anonymous — or "anonymized," as Tanner said in the book — it doesn't mean the data can't ultimately be tied back to an individual. 

"If you add many pieces of information about you over time, it's increasingly at risk of being reidentified," Tanner said. "So it may be your doctor's office visit three years ago. And then it was a blood test that you had a year ago. And then some prescriptions you had this year and other information.

"If you add different pieces of information, such as different cities where you may have had medical care, then it becomes ever easier."      

Among the concerns Tanner has over the collection of medical data is that it could undermine people's trust in the medical profession. He said if people are worried their sensitive information could become known to people outside the doctor's visit, they might be less inclined to share necessary information with their doctor. 

But he's also worried this data could lead to discrimination against the patients. 

"For example, employers might be interested in this information," Tanner said. "Very expensive employees who cost them a lot through health insurance costs might be worth getting rid of, even though that is not allowed."

He also points to businesses such as life insurance companies, which could use the information to deny coverage. But beyond that, he points to individuals who might be able to get their hands on this information to embarrass the patient. 

"All sorts of people can use this information for bad," Tanner said. "And that's something that we should be concerned about. Especially to the future, as such reidentifications and use of this data become more possible."

One of the big arguments for the collection of this data is that it could be used by scientists to help figure out correlations between certain habits and diseases, which could potentially lead to better treatments.

But Tanner said while this argument is out there, there hasn't been an example so far that shows researchers have been able to make a big breakthrough with data available. 

But, he said he does believe the conversation many people should be having is about the say they should have in how the data is used.

"Right now, if it's anonymized data about us, if our name is removed, we have no say — in fact, we're not even informed when that data is traded and sold about us," Tanner said. "I think we as patients should have the say in what happens. And I think many people would gladly give it to science, to respected researchers, and institutions in the hopes that they could make use of it to help solve diseases."

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