If my personal experiences with Glaxo’s customer response center and consumer-focused Web sites are typical, then all the comments I have been hearing about the drug industry’s poor consumer focus are true.

The story begins with “My Sojourn as Market Research Subject for Levitra.

Back in January, in response to a TV ad, I registered on www.mensfacts.com to receive a Men’s Facts Kit and free sample offer for Levitra, a treatment for erectile dysfunction (ED) manufactured by Bayer and marketed by GSK and Schering-Plough. In August, I was called by a market research firm and invited to come to their Philadelphia office for an interview, which I did.

However, afterward I felt that my privacy concerns were not adequately addressed before and during the interview. I also wondered how it came to be that I was called by phone when I did not give permission to anyone to call me. In fact, the web form I filled out did not even ask for my phone number. The privacy issues were covered previously (see “Market Research: Privacy Matters“).

I decided to followup with GSK (the company I reached by calling the 1-888 number on the mensfacts.com privacy policy) and try to find out how they or their agents — ie, the market research firm — got my phone number and, more importantly, how it could be that I was called when I did not give permission (a clear violation of the privacy policy available on mensfacts.com).

So began my experience with the “Call Center from Hell.” OK, maybe I exaggerate at bit. It may have been Purgatory rather than Hell. The point is, it took me three and a half weeks and three phone calls to get to someone that could actually tell me something about the information they had about me on file and who was able to do something to satisfy my concerns.

We’ve all had similar experiences calling company “hot” and “help” lines:

The First Call
I first called 1-888-825-5249 on August 21, 2006. “Nikki” answered. I told her my story and expressed my concern about being contacted by phone for market research although I never gave my phone number or permission to be contacted that way. I said my understanding of the mensfacts.com policy was that I would only be contacted using the information I provided.

The policy states: “BAYER, GSK, and Schering-Plough will only collect personally identifiable information, such as your name, address, telephone number, or e-mail address, that you provide or that is provided to us with your permission.” [I DID NOT GIVE MY PHONE NUMBER OR PERMISSION TO USE MY PHONE NUMBER TO CONTACT ME.]

Nikki said: “Let me see if I can get some information about that.” She asked for my name, zip code, and phone number, which I gave her. I was put on hold for two and one half minutes.

Please Hold While We Deliver Some Drug Industry Propaganda
While on hold I was treated to several propaganda messages, which were recordings of people claiming to be Glaxo scientists and other employees. One “scientist” said “I want to cure cancer. Is that ambitious? Yes. Would you want it any other way?” Then the voiceover says “Glaxo SmithKline. Today’s medicines, tomorrow’s miracles.” The underlying message is “we are working to cure cancer and the high prices of today’s medicines finance this research.”

The last message I heard while on hold featured how swell operators were at GSK in doing their jobs helping people who call GSK with questions. The take away was “We don’t hang up until you have answers.” There was hope for my case!

Anyway, when Nikki came back it was apparent that I wasn’t going to get the answers to my questions.

At first, Nikki directed me to the privacy policy on mensfacts.com, which I interpreted as the ultimate brush off.

But then she said “it is certainly surprising to us that you were called. Because that definitely shouldn’’t have happened. We apologize.” That was a start and again I was hopeful.

Hope was dashed, however, when Nikki said she wanted to do more “research” about “our policy and how this program works regarding your information.” She asked if she could call me back at the number I supplied after she gathered more information. I said yes.

The Second Call
I called again on August 24, 2006 and asked if they had any other information about my complaint. I also inquired about getting access to the personally identifiable information that GSK had on file about me.

The operator — Paulette — said Nikki sent the information to “the people who would research this.” I was told that the “research” usually takes several days and not to expect an answer until next week.

I asked if she could help me find out what information GSK has on file about me for verification that this is the information I provided and that it included adequate permissions. Paulette said that I have wait for the research group and “all that information will be supplied to you. It could take a few more days.”

The Third Call
On September 6, 2006, I called GSK again and this time Anita answered. Here’s what I learned from Anita.

GSK had information about two “John Macks” in Newtown, PA at different addresses. It turns out that both were me — one file had my business address, the other had my home address. Both files contained information I provided via Web sites.

The “business” data was from a Paxil support site — HOPE for You (www.hope4u.com). That data set included permission to contact me by e-mail or regular mail, NOT by phone.

The “home” data was collected by mensfacts.com and, according to Paulette, included permission to call me by phone. That’s surprising because (1) the mensfacts.com form doesn’t have a box to enter a phone number, and (2) it does NOT ask for permission to call — it only asks if I want to receive the kit by U.S. Mail, Online or Both.

Could it be that GSK combined data from the hope4u.com dataset with data from the Mensfacts.com dataset and gave this to the market research firm that called me for the Levitra interview? That certainly would not be kosher. Or could it be that GSK was lying about the permissions? That also would not be kosher.

In any case, tracking this down via GSK’s call center is now dead end. I still don’t know why I was called by the market research firm. My next step is to call the MR firm and get their side of the story. I may also contact GSK’s privacy officer.

The lessons I learned are:

(1) don’t expect much consumer-friendly help from drug company call centers when you have a problem with the sensitive information they have on file about you. They won’t call you back and repeated calls to them are required to get any satisfactory answers; and

(2) the same is true dealing with drug companies through their Web sites. I tried to log in to www.hope4u.com but did not remember my password. I filled out the form to have my password sent to my e-mail address. That was 2 days ago. So far, nothing!

GSK, you have a long way to go before you earn my trust again!