Social Media and Medicine Paradox – Is There a Movement or Not?

 I am in Europe, where I have been giving a talk on Social Media and Medicine, similar to one I gave last week in Canada.  In fact, I've been giving talks on Social Media and Medicine all over.  Certainly, it seems, people are extremely interested in this topic.  

And for good reason.  Because all sorts of statistics, that we all nearly know by heart at this point, indicate that patients and consumers are using social media,  not just the Internet, in ever expanding ways and volume to learn about medicines and treatments.  And as physicians have less and less time for in-person efforts at learning the latest developments, online communities for physicians are flourishing.  

And as noted last week, bear in mind that social media as we know it has only budded into existence in the past few years, with Facebook, Twitter and YouTube coming into existence all within the last 5 years, but with use skyrocketing.  New tools are emerging ever more quickly and uptake is not taking years, it is taking a matter only of months.  

Meanwhile as this unfolded, regulators were taken by surprise, to say the least.  Now, and finally, the the FDA is struggling to apply an inappropriate means of guidance development which takes months and months, if not years, to a phenomenon that changes nearly weekly.  

Still, using apparently the only tool at their disposal, the FDA belatedly set out to put their process into motion when on September 21 they announced a public hearing that was held on November 12-13 in Washington to gather feedback and input on specific questions the FDA had about the nature of the Internet and medical product promotion.  I think rather than promotion, the meeting should have considered the subject with a more judicious title – "Social Media and Medicine" because the title focused on medical product promotion indicates a prejudicial state of mind – that any time a company is talking about its product, it is necessarily promotion.  That, in fact, is not the case. Teaching about a mechanism of action or describing how a new class of treatment is intended to work should not necessarily be assumed to be promotion.  It could, in fact, be education – and necessary education.  But that is a digression.

The real point is this.  There is a great public hunger and consumption of Internet material on healthcare in general, and for people to get their information not necessarily from large institutions, but from other people whom they trust.  That used to be family and friends with whom they spoke. Today, it is increasingly expanded to people they meet in disease-specific social networks on-line. Medical product manufacturers, in fact, are the real experts on the products that they produce – having invested millions of dollars and effort in testing and researching them.  The information they have ought to be able to find its way to the patients who seek it.  Prudent oversight of promotion is necessary, no one would deny that.  But a denial of a role for the provision of education through either active, or passive oversight of regulation does not serve that end.  That is the current status quo.

And yet surprisingly, when the FDA held its meeting in November, while there was a healthy turnout of observers, and a budding social media movement among some that might be called social media activists (including myself) as evidenced by the development of a site that aggregates information about the FDA and social media (including the tweets from the meeting)  made possible by the brilliant Fabio Gratton, there was little participation by the biggest stakeholders of all – medical product manufacturers.  Only a few showed up to say anything.  Most of the time was taken up by secondary and even tertiary stakeholders like communications firms and bloggers.  Where were the pharma companies?

One would hope that they were, and are, biding their time to carefully measure a response and would be entering their comments into the docket, being kept open by FDA until February 28.  But so far, there are only 22 documents that have been entered into the docket – none appearing to be from a medical product manufacturer.   In November 2009, I wrote a posting that reviewed the roster of speakers at the public hearing and lamented the lack of medical product companies in the hearing – see "What if FDA Threw a Party and Nobody Came".

And so the paradox – there are many patients lining up, many activists pushing for change, and even the FDA woke up to the need for getting input into a potential guidance or direction.   Now there is a need for the primary stakeholders – medical product manufacturers, to state their viewpoints about social media – even as developments like Sidewiki, Real Time Search and other interventions emerge to press new questions with even greater urgencies.