I’m looking for your thoughts and opinions on a matter which may directly impact us as patients and the manner in which we get information. This Thursday and Friday (November 12-13, 2009), the Food and Drug Administration (FDA) is holding a public hearing “on how pharmaceutical companies use the web and social-media tools to market their products - the first step to providing guidelines around this type of marketing. Sixty-two speakers from pharmaceutical companies, media companies, agencies, and others have been asked to give their viewpoints.”
I’ve been following the lead-up to this event fairly closely as the CEO of HealthCentral, Chris Schroeder, will be speaking during two sessions. HealthCentral is even hosting cocktails after the first day of hearings. (invitation seen here) Have I ever mentioned that I live only about 4 miles from HealthCentral's Arlington, VA, offices? I do, although I've still not been over there to check things out in person.
I will borrow the words of Ted Smith, EVP of Patient Engagement at HealthCentral, in shedding light of what the core issues are in regard to the hearings.
“Without getting into a lot of inside baseball about the many issues and opportunities that surround Direct to Consumer (DTC) advertising online, these hearings represent a profound and positive shift in the relationship between government, industry and the public. Should Pharma companies be able to interact freely online with individual patients who use their products? What types of disclosures do they need to make? What about Twitter posts that mention side effects of branded treatments? – where do lines get drawn on regulated accountability? We have seen a lot of very positive impact of the administration in both acknowledging and embracing new media and I’m delighted to see the public invited and engaged. Government agencies are getting with the times and recognize that the transformation of media can mean improved citizen engagement and empowerment.”
With all of the talk about involving the public, John Mack of the Pharma Marketing Blog points out that only 9% of the speakers represent consumer advocates. I looked through the list of speakers and had a hard time identifying who the five were who represented the consumer (ie. patients).
Now I am quick to admit that I do not NEED, nor even pay attention to, direct-to-consumer pharmaceutical advertising which is presented on TV or in magazines. What I will do is look for relevant information on pharma websites regarding their products and the risks/benefits associated with them. In fact, I would like to see more information made available regarding research studies, post-marketing statistics, and support for improving our quality of life.
What I don’t what more of is industry spin and deceptive marketing practices. Transparency should be promoted and required from all involved. I also don’t want pharma to avoid direct conversation with patients just because they fear the responsibility of reporting serious adverse events to the FDA. Hey, as a patient I’d like to know when a company gets consistent adverse events reported which differ from what was revealed during the limited time of clinical trials. But what we get to see in the really tiny print on the prescription information form is the data which was reported during trials and which may not represent “real world” experiences.
The search for “real world” experience is probably one reason why you are here, reading my post today and posts of other patients here everyday. We have come to trust other patients more than we trust the drug companies (who really do provide products we need) or sometimes our physicians (if we feel that we’re not being heard and respected as engaged patients). Read “MS Can Take a Hike!” for more on my views of patient empowerment and community.
But what I wonder is - What are your thoughts when it comes to pharma marketing or open conversations with pharma representatives?
Have you ever reported an adverse event whether to your doctor, the pharma company of the product associated with the event, or directly to the FDA? You can learn how to report serious adverse events on the MedWatch website.
What type of advertising do you find useful and pertinent to your interests and needs? Do you find that type of advertising here on HealthCentral? (This is a question just for my personal interest and is unlikely to be noticed by executives of HealthCentral.)
Chris Schroeder has made available his testimony for the FDA hearings. A number of speakers have uploaded their testimonies for HealthCentral to share ahead of time, while links to more presentations can be found. In addition, several of the speakers have made their presentations available on their own blogs or company websites.
For those who may be interested in submitting comments to the FDA before the deadline on Feb 28, 2010, please consult the original FDA announcement of the hearings.
I invite you to share your initial thoughts here in the comments section.