I don't know if all you fellow patients realize this, but the big companies that make the medicines and devices we rely on (those giant Pharmas that we love to hate) are struggling something fierce to come to terms with Social Media. By that I mean they see the world of blogs, social networks, YouTube and wikis exploding all around them and they're not quite sure what to do about it.
But with the Obama Administration now charging to create an open, "Wired White House," big industries of all kinds are recognizing that they need to do something, soon, to become active members of this web-connected world in which people will talk about their companies and products with or without their input.
Yet in the highly regulated, risk-averse world of Pharma, it's not easy. Over the last few years, I've talked to many companies about the obstacles and opportunities, and even provided some with ideas from a patient-blogger's perspective. Still, with a few exceptions (notably Johnson & Johnson), not too many of the "diabetes giants" have yet established much of presence at all here in our interactive virtual world.
Two interrelated hurdles stand in these companies' way:
1) FDA regulations that require reporting of "adverse events" and "off-label uses" of drugs. If a company becomes aware of a person reporting negative side effects, or taking a medication for an unintended use, they are by letter of the law obligated to report these events. But does that mean that every company employee who reads a blog and happens to see something negative is responsible for reporting it to the FDA? Nobody's sure, so companies have found it easier to simply ban blogging and networking activity.
2) Fear of the above. We live in a highly litigious country, so it makes perfect sense that companies making highly regulated medical products would want to steer clear of the risk of being sued — over comments their own people might make online, or unreported adverse events, or God-knows-what-else might happen on the freewheeling Internet? Imagine what criticism they might be opening themselves up to, if they started a customer-facing twitter feed like Jet Blue's, for example, but weren't able to respond satisfactorily to every imploring tweeter.
Who's Done What
Still, some have managed to dip their toes in this new frontier. Johnson & Johnson went out on a limb by starting a company blog. The trouble is, they're not allowed to discuss strategy or product specifics there, so what's the use? J&J also has a YouTube channel. If you search for Bayer on YouTube, on the other hand, the first thing that comes up is an MSNBC exposÃ© of a drug cover-up scandal. Ouch. Interestingly, Pfizer UK (not the US!) also has a YouTube channel, although it appears none-too-active.
J&J also had a unique approach to getting close to social networks: buy one. As many of you know, they acquired the ChildrenwithDiabetes community last year. Read this great related interview on BNET Pharma about "Why Pharma Stays Stuck in the Web's Past."
J&J CWD Chief Joe Natale states that "the FDA is, as we speak, evaluating the social networking space. [The FDA does not have] a robust dictionary or guide for this." Indeed they've left the guidelines for social media as yet undefined (a "gray area"), and this needs to change.
Not surprisingly, it's been a little easier for small, nimbler companies to find neat ways to "get involved" with very little investment and very little risk. For example, AgaMatrix with their Diabetes Blog Directory, or DexCom, which decided to reach out and sponsor Kerri in her coverage of their product.
Meanwhile, none of the other big guns — Amylin, Bayer, Eli Lilly, Medtronic, Novo Nordisk, etc. — seem to have much going at all in the social media sphere as yet. But it surely won't be long.
And frankly, that's where they could use our help. They've reached a point at which patient community input is essential (finally!), and they're all dying to know: What would you actually want from your meter or pump company or your drug manufacturer online? Other than an old-fashioned static website? Would you visit a blog where you could ask questions to in-house experts? Would you follow a twitter feed that pushed out product updates and tips (without necessarily replying directly to tweeters)?
Many companies are struggling to justify throwing resources at this stuff if it doesn't necessarily bring any tangible ROI. But that's not really the point, I keep saying. And now Wired magazine has said it for me in their White House example:
"A presidential Twitter feed, Flickr photos, or WhiteHouse.gov video Q&A sessions may not vastly increase transparency or deeply inform policy, but they create a valuable intimacy with citizens. People who think they are being listened to tend to respect more the person talking."
Isn't that the truth? Don't you feel better about dealing with any company if you at least know they're listening? Especially if it's the company that makes the stuff that keeps you alive and healthy?
These Pharma companies WILL jump in to social media — it's just a matter of how, and when.