When consumers around the country started getting letters from a company that they had never heard of, inviting them to participate in clinical trials for medical conditions that they hadn’t disclosed to many or didn’t even have, the alarms started to sound, quietly at first but with increasing urgency. Were doctors, hospitals, or other providers breaching medical privacy laws? Had there been a serious but unpublicized leak or unwelcome disclosure of patient data?
Kudos to the information site Buzzfeed for digging in and finding out how Acurian Health, a firm with an address in a rural county outside of Philadelphia, exploits state-of-the-art Internet marketing and data-mining techniques to learn, in creepy fashion, about Americans and their illnesses.
It does this by buying marketing information that a range of companies collect on customers, some of it volunteered and others extracted from data points like zip codes, purchasing patterns, and available demographics: Do you live in an upscale or modest neighborhood? Are you and your neighbors most likely to be highly educated professionals or blue-collar laborers?
Acurian is abetted by Walgreeens. The giant drug store chain, relying on a legal exemption that customers sign allowing for medical research, sends customers Acurian clinical trial recruitment mailings, based on the marketer’s understanding of their possible medical conditions and drugs they have been prescribed and ordered at Walgreens.
Acurian also mines data it gathers from web sites it creates, ostensibly with basic information on diseases and conditions. It tracks user searches, harvests email addresses they may volunteer, and may combine what it learns with other proprietary data the company holds to learn identities and determine viewers’ illnesses.
Buzzfeed points out that Acurian isn’t pushing clinical trials because of their potential value in improving medicine and medical care via appropriate, carefully monitored, fully disclosed, evidence based research. Clinical trials play a major role in medical advances.
Acurian makes big money from its work, for which Big Pharma pays millions of dollars. Drug makers, in late stages of product testing, need qualified, rigorously screened, and sometimes hard to find human subjects. Big Pharma’s also a voracious consumer of all manner of data on patients and their sicknesses, which drug makers might target with new or existing products.
Critics say that Acurian, while it may follow the letter of the law, not only fails to be clear and transparent about its business and practices, it also pushes boundaries in its dealing with highly private and personal health information.
Yes, the company may be able to ferret out your illnesses, but is it right? Do you want your postal carrier or nosy neighbors to see you’re getting its mailings and assume you have a condition? You may have heard of an illness while watching a TV show. But do you want others to think you have a disease just because you went online to learn about it, stumbling on to an Acurian site bristling with computer tracking “cookies?” With many clinical trials run with late-stage patients, will their families and loved ones be subjected to unneeded anguish if they see them get unsolicited pitch letters from Acurian?
In my practice, I see the major harms that patients suffer while seeking medical services, and I know the value that clinical trials can provide not only to many who are sick and in need but also to improving medicine and medical care. At the same time, we can never allow drug makers or anyone else to treat real people as something akin to lab rats.
A critical way that patients protect themselves is through their fundamental right to informed consent, which applies in medical care. Informed consent expresses a concept at the core of any free society: Each person has a right to decide what to do with his or her own body, as long as he or she doesn’t hurt someone else. Doctors and medical scientists, though they may be more knowledgeable about some specialized topics, also are flawed human beings, and may not be as forthcoming as they should with patients about their care. They still must always patients the important facts so they can make intelligent decisions about what treatment to have and where to get them.
Postal and health regulators already are hearing an earful about Acurian, Buzzfeed reports. And I think that’s right. Clinical trials provide invaluable medical and scientific evidence that must be researched in clear, careful ways. We could damage a precious asset if we let data farmers turn a serious path of study into just a way to make a fast buck.