Last Updated Dec 20, 2010 1:44 PM EST
The government couldn't enact this fast enough to please me. The way things stand now, consumers' personal information -- often sensitive stuff about our health -- is being sold without our knowledge or consent to on-line marketers; they then use it to bombard us with sales pitches for expensive drugs, medical devices and even surgical procedures.
How does this happen? Let's say that you've had a pain in your chest for the past two days. If you're anything like me, you can't wait to see a doctor. Instead you rush to your trusty computer and google "heart attack" or "chest pain" and try to figure out by wading through scores of websites, blogs, scholarly medical journals and interactive quizzes, whether you should call 911 immediately or stop snacking on Jalapeno peppers.
But when you make such a query, according to a 144-page complaint filed last week with the FTC by several consumer groups (the Center for Digital Democracy, the U.S. Public Interest Research Group, Consumer Watchdog and the World Privacy Forum), mechanisms designed to pick up your medical information are lurking everywhere. "Consumers now confront a sophisticated and largely stealth interactive medical marketing apparatus that has unleashed an arsenal of techniques designed to promote the use of specific brand drugs and influence consumers about treatment for health conditions," states the complaint.
What are these techniques?
First of all, Google may present you with ads. When I hunted for "chest pain," I received an ad for a website called IAmProHeart.com. It's sponsored by Bayer aspirin and comes crammed with uplifting (but scary) stories of once healthy people who suffered heart attacks and survived largely because they took some -- you guessed it -- Bayer aspirin. Once you visit the site, Bayer knows your computer address and may even be able to track where you've been before and where you go after (maybe ilovemytummy.com or some such). But if you opt for the site's offer of a pill tote (in which you or your loved one can keep a ready stash of Bayer) in exchange for a $5 contribution to the National Coalition for Women with Heart Disease, then the folks at Bayer -- and at the charity -- have been able to collect your name, address, email address and credit card number. From there, it's a small step to send you emails reminding you to take Bayer aspirin every day, a definite sales booster for the company. And if Bayer knows that you also visited ilovemytummy.com, it may offer you its specially-coated aspirin that protects stomach linings. (BTW, aspirin may prevent a heart attack, but the generic variety is every bit as efficacious as Bayer or other brand-name products.)
But you probably figured that IAmProHeart was the online version of an infomercial. Let's say that you are looking for unbiased information about diabetes. You could end up on a site like DiabeticConnect run by Alliance Health Networks which says it "creates health networks that connect people to support communities for a growing number of health conditions." (It also operates SleepConnect, ChronicPainConnect and DepressionConnect.) It sounds very patient-oriented. After all, it declares that it's a "free on-line community to help you." In fact, it wants to help you see more drug company advertising. According to the consumer groups filing the complaint, Alliance tells pharmaceutical companies to whom it markets services that its sites will help them "develop relationships with individual consumers using sophisticated data-mining tools...Our proprietary properties and powerful cross-selling network are built specifically for the unique needs of healthcare marketing, including our proprietary PersonaMatch co-morbidity ranking algorithm that helps place your message in front of the right customers based on the prevalence of related medical conditions and to use predictive modeling to place correlated health care advertising in front of the right customers." So, if you've got toe fungus, you're likely to see ads for toe fungus cream.
Alliance is not the only company operating customer tracking schemes that masquerade as patient websites. Good Health Media's whose sites include RightHealth.com and WomensHealthBase.com, among others, claims to advertisers that it can "achieve vast reach targeting specific health conditions like Depression, COPD, Diabetes, Asthma, Allergies and more." Supposedly, it identifies "groups with common sets of conditions/health-related characteristics by geographic region via insurance claims and individual opt-in data." I'm not sure how they do that. When I clicked on narcolepsy, it presented me with ads for Pottery Barn which weren't enough to keep me awake. But in its discussion of the condition, the site seemed to push Modafinil, a drug that combats daytime sleepiness.
Healthline, another patient information site, brags that it reaches over 4 million health consumers monthly. "For each condition or disease, brand messaging surrounds consumers as they dive deeper for clinical information." With the site's "SymptomSearch," more personalized advertising comes into play as consumers drill down to what's bothering them.
Hearst's Realage.com offers visitors a test that solicits a lot of health data and then provides them with their "real age." I suppose if you smoke, for example, it adds a hundred years. I took the test myself some years ago and by lying only a little learned that I was a mere 25 years old. But I never knew, because the site didn't tell me that it uses "e-mail based advertising campaigns targeting specific segments of the Realage membership (8-plus million members) based on their health profiles of over 150 health and lifestyle data points gathered from the RealAge Test.
All the sites offer newsletters or email updates. Once you sign up for them, says Jeff Chester, Executive Director of the Center for Digital Democracy, "you may as well go to the mall and hand out cards saying 'I have Alzheimer's disease' or some other condition." Soon after you sign up, you will probably receive letters suggesting that you talk to you doctor about your asthma or your acne, your menopause or your herpes -- or your child's depression -- and maybe ask about a particular brand-name drug. Studies have shown that in many cases, the request is enough to lead to a prescription.
There's nothing wrong about seeking and getting medical information. But consumers should know when or whether they are providing facts about themselves and what happens to them. Do they go to drug manufacturer marketers, insurers, employers? And how will such material be used? And if consumers don't like the answers, says Spencer, "They should have the right to opt out." I say, "Amen."