A Disturbing Signal at FDA Social Media Conference

Just before the lunch break today there was a presentation made by Diana Zuckerman of the National Research Center for Women & Families that sang a strong note of consumer protectionism.  She began by lamenting the state of DTC advertising, citing as a case on point, the DTC campaign run for Allergan's Latisse for not educating consumers enough about risk.  She was clear that risk and benefit of a drug need to me equally marketed and equally accessible.  She also stated that if risk information is one click away then it is "one click too far" despite the fact that there have been several presentations today making a reasonable argument in favor of the one-click rule (faux-rule). 

Then, however, the speaker went on to state that the FDA requirements for Vytorin, while included on the company's Web site, are not included on sites like Drugs.com.  She then stated she doesn't know where that site gets their funding from.  I don't either, but the clear insinuation was that  there might be drug company support of various sites that causes risk to be underplayed.  She may be right, I don't know.  But for someone so clearly demanding evidence-based communications, she did not seem to be playing on that side of the street herself, offering innuendo rather than evidence. 

She then addressed Sidewiki and expressed concern that a student can edit a piece written by a Ph.D. and that an entry can change often.  She said an entry for a medical product could read like a press release.  The clear insinuation here was that companies regularly go in and promote drugs by editing Wikipedia content.  I recalled a discussion this week with a medical products producer that was lamenting the fact that entries about some of their product were old and clearly misleading, but that they weren't allowed to edit entries.  I was shown evidence.  But there was again no evidence here, only innuendo that companies do this regularly.  Maybe some do.  I don't know of one.  Most I know are terrified of touching a wiki.  

Lastly, she suggested FDA "partner" with Wikipedia and various popular drug information sites to ensure that their content is transparent and accurate.  She did not state by what authority FDA would suddenly regulate these entities. 

I'm as in favor of consumer protection as the next person, but it feels like evidence based decision making should be a two-way street.  If you are going to base policy change based on a point of view, that point of view should be backed by evidence, not innuendo.  But the disturbing note came during questioning when Tom Abrams seemed eager to get further input on how the FDA could intercede in these practices.  It signaled that what we might be in store for from the outcome of this meeting is the possibility that we will get more regulation that is based on perception, not evidence.

But we won't know that any time soon.  When asked by me at the beginning of the meeting for two minutes to enlighten people about next steps for the FDA after this meeting, he refused.  He stressed that the FDA was here for these two days to listen, not to talk. 

That may be part of the problem and may represent a point of view of why we are here so long after the Internet became the preferred route for healthcare information.  This should be a dialog. 

Share this:
Share this page via Email Share this page via Stumble Upon Share this page via Digg this Share this page via Facebook Share this page via Twitter
This entry was posted in Uncategorized. Bookmark the permalink.

2 Responses to A Disturbing Signal at FDA Social Media Conference

  1. Wow, this is interesting stuff. I’m glad you’re blogging about this. Is there some insane belief that there can be control over Google Sidewiki? And I also wonder why there isn’t the same exact concern over comments posted on news stories and blogs. Or has that been a bone of contention as well. The way I see Wikipedia is this: If you believe everything you read on a site that you KNOW has been and can be edited then you are a bit off the mark. Yes, it’s good for collaboration but it is not nor should it be considered a vetted source. If someone with a doctorate is posting on Wikipedia, they know full well that anyone else with lesser credentials can change their content. You’ve just gained a follower. Keep it coming!
    Angela Connor

  2. cliffintokyo says:

    Sometimes you just have to tell people what is good for them, otherwise they just self-destruct, or worse, harm others thru their self-determination.
    The technology is way ahead of the potential social good/harm debate; parallels with the history of development of atomic power maybe?