Wednesday, April 16, 2008

The price of trust

I have a much longer post on health disparities, race, and insidious marketing techniques that mis-appropriate people's trust people, but I'm still working on it. However, this evening, I heard this story on the radio (KQED, broadcast of All Things Considered) and had to get this down now.

In the story (transcript pending) Douglas Kamerow comments on the news that Merck pharmaceuticals may have written stories about VIOXX and then published those stories in medical journals under the names of medical doctors and researchers who the drug company has paid. The practice is politely called guest authorship - doctors and scientists are paid to lend their names to studies. Some call it by the more devious name ghost authorship - in which the company pays for the research and hires ghostwriters - masking its own involvement in the research but making sure it gets into the medical journals and literature that matter most to your doctor and mine.

Kamerow's commentary tells of articles published in the New England Journal of Medicine that discussed the benefits of a lung cancer screening tool. "On investigation" (Kamerow's words) the study was found to have been paid for by foundation funds. A foundation set up entirely by tobacco industry money. Five words in a Google search revealed this (from the New England Journal of Medicine):

"The Lung Cancer Screening Group's research was funded by 32 different entities, one of which was the Foundation for Lung Cancer: Early Detection, Prevention and Treatment. It has not been our practice to inquire about the specific sources of funding of foundations such as this. We recently learned, however, that this foundation was headed by the principal investigator of the 2006 study, that it was housed at her academic institution, and that the only contributor during most of its existence was the Vector Group, the parent company of Liggett, a major tobacco company. We and our readers were surprised to learn that the source of the funding of the charitable foundation was, in fact, a large corporation that could have an interest in the study results."

SourceWatch had this to say about the event:

Vector claims it exerted no control or influence over the research, but some tobacco control advocates believe Liggett funded the study to show that lung cancer is not as bad as many have long believed since such a high proportion of people who get lung cancer, a disease closely associated with cigarette smoke exposure, can be saved by screening.

Henschke's study, and her Foundation, also raised questions about the use of foundations to shield information about funders -- and particularly corporate donors -- from publishers and the public.

And here is what is posted on the Weill Cornell Medical College site, where the doctor behind the Foundation for Lung Cancer: Early Detection, Prevention and Treatment and the study in NEJM are located.

The Foundation for Lung Cancer: Early Detection, Prevention and Treatment received an unrestricted gift of $3.6 million from the Vector Group, the holding company for Liggett Tobacco, in a series of payments, from July 2000 to June 2003. The gift was used appropriately for the public good -- to support Weill Cornell Medical College's highly regarded, multi-institutional, international I-ELCAP [International-Early Lung Cancer Action Program], whose objective is to perform CT screening research for lung cancer in order to determine whether such screening improves cure rates for persons at risk.

The original $2.4 million pledge to the Foundation -- and the work funded by the Foundation at Weill Cornell -- was fully and publicly disclosed at the time through a press release, and was substantially covered in the lay media. It was discussed and disclosed in the academic community at conferences, which were widely attended by advocacy groups, agencies, and by investigators from around the world interested in lung cancer screening. It was also fully disclosed to other foundations and groups wishing to contribute funds to I-ELCAP.

The other post I am working on involves a letter from a major labor union encouraging its members to ask their doctors for a certain drug prescription. This is well-covered on the HealthBeat blog here. The title of the post, "Pfizer enlists a Labor Union (SEIU) to Promote the "Cholesterol Con"" gets to the heart of the matter - after all, why would a labor union be recommending drugs to its members?

These are troublesome practices. For (at least) the last seven years the public trust in nonprofits - be they universities, foundations, labor unions, social service organizations, publishers, health providers, or any other kind of organization in the sector - has been on the decline. Confidence in the sector hovers in the mid 60th percentile.

And here's the irony - these kind of marketing shenanigans involve a lot of players - corporate interests, individuals (the doctors), nonprofits, the media, and the public. Yet at the end of the day only one of these - the nonprofits - will pay the highest cost in terms of trust and confidence. Why is that ironic? Because these organizations have the most riding on keeping that trust and confidence.

In other words, these schemes in which the funders of research or opinions are paying others to serve as a mask for their vested interests will destroy the "reputational capital" of the others, be they medical journals or labor unions. But at the end of the day, the effect that they have on on the original vested interests will be minor and fleeting.

As a society we're likely to "pooh pooh" the bad behavior of tobacco or drug companies, or shake our heads in disgust and then move on. But somewhere in our minds, when we remember the story of the doctors and the lung cancer study, what we'll remember most accurately is that there was a nonprofit somewhere in the mix in that story. And later, when we are asked whether or not we trust nonprofits we'll think back to these stories. We won't remember the details (like how the nonprofit medical journal uncovered the funding coverup) but we'll remember there was something fishy in there. And we'll cast our doubt on the nonprofits. Our confidence will slip. Our trust diminish.

That is a high price to pay.

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