I’ve been thinking quite a bit about this topic. There is another discussion Manny started US: What should FDA do in terms of social media and pharma companies? but it is not very active
In general, I don’t believe that they should be allowed to interfere in these sites. Social Media sites provide incredibly useful information and support systems that are invaluable to those using them.
Pharma is used to controlling what information is seen about their products thru advertising. Social Media turns that on its head by having patients controlling information about those products by sharing their experiences, usually in a way that everyone can understand without needing a medical degree.
It is simply amazing how much you can learn about a condition, its treatments and results from those treatments in a very short period of time from Social Media sites. Patients are now going in to their doctors much more educated and can ask intelligent questions regarding the various treatments available.
Pharma was/is able to influence doctors to utilize their treatments over others. Often, the latest, greatest and did I mention most expensive? That used to work because it was so difficult for the average Joe, Jill, Bob, or Susan to learn enough to ask about other treatments. That whole model no longer works when people utilize Social Media to quickly access all the information that was so hard to get in years past.
This scares Pharma.
I also see the role of doctors & patients changing as well. More and more people are starting to realize that the docs are advisers only. The patient is beginning to understand that they are responsible for their health and your doctor should provide guidance for you to make the best decision about your health. This is also made possible by all the knowledge that is available via Social Media. It allows the patient to take that step to be the leader of a medical team that works for the patient to ensure their health. Before that knowledge, patients would tend to defer to whatever their doctor said because they didn’t have the knowledge to ask the questions. In general, I think that most doctors welcome this. It makes their job easier and a lot more effective.
But (there is always one of those, isn’t there?), what about Pharma advertising? Hasn’t that been educating patients on available treatments for years? Well, actually no. It has been educating patients about the latest, greatest, and most expensive treatment from that company. I honestly believe that Pharma should not be allowed to advertise directly to consumers. With the advent of Social Media, any need to disseminate information in this fashion for “educational” purposes has vanished. Social Media allows people to find out all those things that Pharma wants them to find out and some that they probably don’t.
This scares Pharma.
Scaring Pharma? Good some of you say, but what happens when fear arises? Pharma may become defensive and start talking about how bad Social Media is. Hopefully, they will just maintain the status quo and exist with Social Media much as it is today. Or they may decide Social Media is a threat and go on the offensive. This would occur through regulation and government policies about what can be said about medical products/treatments and who can say it. Who can influence policy most? Patients calling their Senators and Representatives or the Big Deep Pockets of Pharma? The Supreme Court has ruled that dollars for campaign contributions are Free Speech, but it seems to me that the Speech of some people is a lot more Free than the Speech of others.
The world has changed as far as medicine goes. Not what treatments are available, tho there are truly amazing discoveries made every day, but how it is approached by the patient. The patient is the driving force now. That is how is should be and Social Media is by far the best avenue to support that.
Social Media must be left alone to evolve into what the patient needs, not interfered with to try and make it work with some archaic business model that really no longer exists.
Social Media on the other hand, has a responsibility to the patients to be transparent about any “gifts” or products for review that they receive from these companies. If someone tends to say they really like XYZ and it is later determined that they got a “gift” from XYZ, that person’s credibility is gone. Social Media has a responsibility to police itself. I believe that the FCC should have a role here to lay out the ground rules that all must follow.
Social Media.
Keep Pharma out.
Keep the FDA out.
Keep the Patient in.
Edit: 12/15/2009 3:10 Central I just had a tweet from Allison Blass that made me realize I had left an important point out. Namely, I say that Pharma should stay out of patient-driven Social Media sites, such as here at tudiabetes. But, what I failed to mention was what Pharma and the FDA could gain from these sites. Namely, perspective. The perspective of someone marketing or designing some type of treatment may be quite a bit different from those who will have to actually use it. Hear what patients that are walking-the-walk are saying and use it to design better solutions.. I think that is the role for Pharma and the FDA in Social Media. As listeners.
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Thanks Judith.
Amen Scott!!
I agree with you. But I think that Pharma is already here. A community with that many members is an attractive platform for viral marketing. Some member profiles may be faked and raise their voice to moderate discussions where their product is critizised. This may happen very subtily but still we have to face this possibility.
You can be sure that Pharma is even trying to place their diabetes products with influental leaders of social networks like founders, bloggers and so forth. As long as I get first hand information and critical journalism about these products I am fine with this development. This way these front runners can even have positive influence on these products in the best of our interest. Of course I would expect that these persons with influence would make it public that they have received products for testing.
In general I have no problems with advertising if the ad and its intention is clearly recognizable. But I get really annoyed when magazines like the german “Diabetes Journal” have addendums purely for product placement. These addendums have specific themes like CGMS and give you the impression that this is the result of independent journalistic work. But then it turns out as “in cooperation with Medtronic” and inside you will find Medtronic and their products only. No word about the whole spectrum of CGMS products in the market or different technologies for measurement. An uninformed reader of this addendum will think that Medtronic is the one and only company with this great technology - and they even combined it with the pump! Let us praise the lord for this level of journalistic independence!
Thanks for your comments Holger and I agree that Pharma is already here
I commented on Manny’s post, but that was more in reference to the link he posted regarding pharma ads.
Beautifully stated. Thanks, Scott. Agree with all your points!
No doubt Big Pharma is lurking on sites. No one has to join as a member to read posts, blogs, discussions & I agree with Holger that discussions could easily be manipulated to promote products. Hopefully, they’re gaining insights into what their customers need & want. It’s no-cost market research that could result in positives, but I’m a skeptic.
(I’d love meter manufacturers to hear repeatedly that we need accuracy since they don’t care that they’re bleeding us dry on test strip costs.)
In some ways, Big Pharma has opened the door for discussions & criticism of products. Their constant ad campaigns bombard us on sites, TV & print ads. Very slick marketing encouraging patients to be Pharma salespeople. Ask your doctor what ___ can do for you. A strategy to increase sales. Not right to entice potential consumers of your product through advertising & then step into social media networks to control the info.
Thanks Gerri, you are absolutely right about Pharma advertising. I wonder how much the prices go up to pay for those huge ad campaigns?
Very well put, I am in full agreement. I’m in the UK, so the companies are selling to the NHS not the individual patients, although pateint preference and lobbying for certain products and treatments might be derived from advertising. I’m Admin on a UK forum that has no advertising, but is supported by Diabetes UK. I think these sites are invaluable to both new and longterm PWDs as the exchange of knowledge and experience, plus emotional support can be truly life-changing for everyone who engages with them.
Thanks Alan, I am somewhat new to the Social Media scene so I was a little worried that my take on the situation might be a little naive as far as patient-driven goes. It’s good to see that other folks see that too
via alexdcRx on twitter
Google Doc with 170+ resources, articles and posts about FDA social media hearings via @pharmaguy http://bit.ly/4Fpjbu
I’ve read some really interesting commentary there
Interesting issue… I have much of the same Pros and Cons that you point out, Scott. I hope those unfortunate cases where Pharma deceives or the Blogger Social Media User is influenced doesn’t ruin it for those of us who Adequately Self-Police and Objectively weigh in on the Pharma issues.