"The industry is afraid to learn of new adverse events through comments on social media sites and the need to investigate each consumer complaint," noted FDAnews. "Gratton says there should be guidelines to encourage pharma to focus more of its time on the general well-being of patients. If pharma companies do this, regulatory agencies should cut them some slack with regard to the use of social media, according to Gratton."
[See my original post on this topic here, which includes access to the audio recording of my interview with Gratton.]
Over on the ePharma Pioneer Club's discussion board, I suggested that this idea could also help pharma improve its public image (see "Start the discussion on improving pharma's rep and utilizing social media to improve health").
You can help get this discussion started by participating in my survey: "What Can the Drug Industry do to Earn Back the Public's Trust?" which you can find here: http://tinyurl.com/d6dzse. Included is a question about Fabio's idea and a box for your comments.
Meanwhile, ePharma Pioneer Club member, RJ Lewis (President & CEO or e-Healthcare Solutions) responded with this call for pharma to trust their "ethic" and "do the right thing":
It's really quite simple, and it's been forever a timeless principle. Individuals and companies need to DO THE RIGHT THING. Regulation is only a mechanism to ensure people do the right thing, because left to their own devices, occasionally they stray.To which I responded:
We are living through one of the most interesting economic eras in a century... a time when "straying" from this principle has become common place. Pharma has always had a strong ethic - and they need to trust it.
David Patterson, Governor of NY today on CNBC said it beautifully. When asked about a decision he made that was seemingly unpopular politically, he said, (and I paraphrase) "That's why I don't look at my decisions through a political lens - I look at them through the lens of doing the right thing. I believe if I always do that, then when election time comes, even the decisions I made against mass opposition, I believe in time, they will be judged to be politically correct, because they were ethically correct."
If there are consequences - regardless of their cause or bias - you can always face them proudly when you did the right thing.
The pharmaceutical industry was once called the "ethical drug" industry. I am not sure, but that phrase may have come into being when drug companies (eg, Merck?) transitioned from selling "snake oil" patent medicine remedies to products that actually delivered on promised results.You can join this discussion by:
The loop has somewhat closed when we are bombarded with drugs to treat "syndromes" that are ill-defined and sometimes ludicrous -- what I will now call "snake oil marketing" tactics using actors pretending to be patients suffering from these syndromes, etc.
Now, in the era of social media, there is the possibility of "snake oil marketers" greatly amplifying the effect of patient testimonials -- by recruiting people through social media. Perhaps the latest use of YouTube videos produced by consumers and submitted to drug company YouTube pages is an example of that.
I note that everything done this way is above board, but is it "ethical?" It is very difficult to determine what is and what is not ethical and maybe that is what we should focus on.
I think RJ and I are on the same side here. We worked together in the distant past (1997) to try and apply ethical principles to publishing health information on the Internet. In that process I learned a lot about "doing the right thing." Again, a loop is being closed! Just as then, today we need to bring into the discussion various stakeholders.
- Taking the "How to Earn Back the Public's Trust" survey (click here), or
- Joining the ePharma Pioneer Club on Facebook and participating in the discussion (click here)
can you elaborate on what you classify as "syndromes"
ReplyDeleteRestless Leg Syndrome comes to mind as an example. It even has "syndrome" in the official name!
ReplyDeleteYou site Restless Leg Syndrome, do you feel this is not a 'true' diagnosis and what is marketed is not a treatment? I wonder what you feels RLS actually is and how it should be treated, if at all?
ReplyDeleteI am not a doctor. You should search this blog for a number of other posts I have written about RLS, which leads me to believe that while it may be a real condition it is blown out of all proportion and some advertising panders to people's fears and make them believe they have a condition when they really do not.
ReplyDeleteWe think when people discuss drugs or therapies it may do more harm than good to the commercial prospects of the drug. Such a possibility is there, but to a limited extent. There is no need to fear the discussions on side effects and ADRs of drugs. Patients expect side effects and ADRs - what they want to know is how to manage them? Or whether they need to switch over to some other drug if at all. So overall transparency and social media interactions on drugs will help the cause of health and that of the pharma marketers.
ReplyDeleteLet us say a discussion unfold on pantoprazole. Most of the patients will naturally say it is very beneficial. Many will want to know how long to use the same in specific conditions like Baretts esophagus. Still others may want to know if achlorhydria will be possible etc. Overall the discussions will be positive and benefit patients and marketers.