With the upcoming Roche summit, I thought it might be appropriate to recycle my TuDiabetes.org blog from 12/15/2009 – Social Media and Pharma

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.org.

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.