Craig Klugman, Ph.D.
Big brother is watching you. And calling you. And selling your medical information to a pharmaceutical corporation.
In the modern age of information as commodity, drugmakers buy database that tell them how much of what drug each doctor prescribes, which patients fill those prescriptions, and whether renewals are filled. They know your medical conditions, test results, insurance data, age, ethnicity, and income level.
Several companies have developed with the express purpose of tracking patients and their medical habits. These data aggregators purchase information from insurance firms, pharmacies, pharmaceutical manufacturers and wholesalers, physician organizations, doctor’s offices, governments, hospitals, laboratories, survey companies, electronic medical record companies, long-term care facilities, and social media. In other words, every visit, click, or transaction you make with a health care-related entity can be sold to these data aggregators. The information is sort, collated, analyzed and then sold to companies to help them to target what drugs to market to what doctors and how to advertise to patients with specific conditions.
Even, the American Medical Association sells information about physicians to many of these companies, unless a physician chooses to opt-out of the program. Only 4 percent of physicians have chosen the op-out option.
Under federal law, this information is supposed to be de-identified before it is used and sold. But there are no guarantees about this, especially since the data aggregators boast that they can link patient information across various sources.
Proponents claim that such information helps improve patient care. By following whether patients refill their prescriptions, the data allows health care providers to track behavior and make sure patients are getting the care and medications they need.
For obvious reasons, this trend concerns the few of us who still believe in privacy. Much of the data is what I would consider to be private health information. And if the data aggregators are selling this information for marketing purposes, it’s only a matter of time before they sell it to your employer, your insurer, and even an angry ex-spouse.
Setting these privacy and confidentiality issues aside, these programs can be an everyday annoyance. I found myself receiving phone calls once a month for an allergy medication that I only take as needed. This wasn’t a single phone call and a message. This was 4 phone calls a day for several days until I picked up and talked to the person on the phone. When I told the caller that I didn’t need a refill, I got a lecture on how important it was to take my medication regularly for my health even when I explained I was taking it as prescribed. I ended up asking to be removed from their call list and not being contacted again, a request that was answered with a “we can’t do that. You have to talk to your pharmacy’s corporate office to have that happen.” Some choice words on my part and threats to report them for harassment finally ended the phone calls. The idea that some nameless entity following a formula meant to maximize their profits knows what I need better than me is not only insulting, it is scary. No matter what they say, their interest isn’t in improving my health, but rather that they milk me for every dollar in profits that they can.
What can we do to stop the commodification of our health information? Sadly, probably not much. We can ask our elected representatives to pass laws to prevent this sort of health data aggregation. However, with the fortunes of Google, Apple, and Facebook riding on just this work, there is little chance of that. I can refuse to go to a physician or hospital that participates in these programs. But that might require going out of network for my insurance and finding a physician who is even aware that any of this is happening. Or I could make sure that I always give fake information when I answer surveys, give out my personal information, and report my medical history. Except that such actions really would compromise my medical care.
When I do go to my physician’s office, I refuse to give them certain information such as social security number. I tell them “You are not a bank or credit agency and have no need for this number.” I also make sure to opt-out of any offers to send me information and cross out any language that lets them share my information with third parties. I often write in terms on my registration documents, “medical information not to be shared with anyone except insurance company and then only for payment, not specific details.” I doubt that helps at all, especially since those reminder calls have just started up again.