Spotlight Shines on Big Pharma's Profiling of Sick People Online

Last Updated Nov 29, 2010 4:29 PM EST

The pharmaceutical industry uses a vast array of innocuous sounding web sites -- such as "Caring.com"* -- that purport to give out useful health data but in fact offer "continuous profiling" of sick people. This less-than-well-publicized aspect of drug marketing is about to become better known thanks to a petition to the FTC demanding such practices be investigated and a federal appeals court ruling that says it's legal.

The management lesson here is that the sins of the category are often visited on the individual: Even if your online marketing is squeaky clean, the fact that your competitors' is not may get you tarred with the same brush anyway.

The FTC petition, from the Center for Digital Democracy and other allied privacy groups, ask the feds to investigate:

The eavesdropping on online discussions of health consumers via social media data mining, enabling pharmaceutical companies to hone marketing campaigns for drug brands;
The lack of clear separation between what is supposed to be editorial content and promotional material by sponsors and advertisers;
Google, Microsoft, QualityHealth, WebMD, Yahoo, AOL, and others are named as targets.

Those are only the most famous names. Who, for instance, has heard of Alliance Health Networks, QualityHealth, Good Health Media, HealthCentral, HealthLine Networks or EveryDay Health? They all sound benign enough. And they say they offer consumers useful, often "unbranded," information about diseases and conditions. But the petitioners argue that they're basically spying on patients whose medical data ought to be confidential:

QH Connect, for example, "continuously maintains data on 9 million members who have requested information about specific diseases, conditions, symptoms, or treatment regimens." QH Connect conducts "continuous profiling" to help health marketers target and acquire the "most qualified consumers"
Good Health Media (GHM), whose pharmaceutical advertisers include Shire, J&J, Wyeth, Pfizer, Sanofi Aventis, and Merck, and also works with Wal-Mart, uses "ConditionMatch" that tracks "in-market" consumers for specific health conditions using "cutting edge behavioral targeting technology." GHM promises medical advertisers that they can "Achieve vast reach targeting specific health conditions like Depression, COPD, Diabetes, Asthma, Allergies and more...
The best example is Caring.com:
Caring.com tells consumers that it is "the leading online destination for those seeking information and support as they care for aging parents, spouses, and other loved ones. Our mission: to help the helpers. We equip family caregivers to make better decisions, save time and money, and feel less alone--and less stressed--as they face the many challenges of caregiving."

But to advertisers it explains that it offers "Geo-Targeting (by state, MSA, city, or zip code), Contextual Targeting, Demographic Targeting, and Role-Based Targeting."

Caring.com* disputed this characterization in an email to BNET:
Continuous profiling of sick people is not our editorial focus or site mission. Instead, we exist to support unpaid family caregivers, providing a wide variety of practical information, not just limited to health and healthy living, but also covering caregiving, senior living, and relevant legal and financial topics.

We are not "spying on patients," do not sell or share our members' email addresses (or private data) to advertisers, and are completely transparent with regard to advertising on our site and our privacy policy. We keep a strict separation between advertising and content, and advertising is clearly labeled.

The issue also came to light recently when the WSJ caught Nielsen engaging in "data scraping" at PatientsLikeMe.com.

The industry may well be right -- as the federal ruling on Vermont's data-mining ban says -- that its market research tactics are perfectly legal. But it is high time there was more transparency that whenever ordinary users search for medical information on the net, Big Pharma is following your every move.

*Note: Caring.com disputes the characterization of its business in this article. Its response was added in part above and can be read in full in the comments section below.
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Image by Flickr user Alan Cleaver, CC.