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.
The Barriers
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 exposé 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.
[...] original post here: Pharma Companies & Social Media: How and When? Mail this post Tagged as: Diabetes, diabetes treatments, diabetic, food, Health, patient [...]
Great post and overall good summary.
I agree with the fact that many companies shy away from social media because of the potential for adverse events. However, I believe that this is almost always used as a convenient excuse. If you look at the real number of REPORTABLE adverse events online, the number is extremely low. Nielsen found this to be 1 in 500 posts or 0.2%.
I call this the Myth of Adverse Event Reporting. You can read more about it here: http://www.doseofdigital.com/2009/01/myth-adverse-event-reporting/
>>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.
J&J also sponsors the Diabetes Hands Foundation, under which the TuDiabetes and EsTuDiabetes social networks are run.
Some online pharmacies, such as American Diabetes Wholesale, are also adding social networking elements into their sites. ADW has discussion fora, expert columns, and recipes.
One issue with Big Pharma getting directly involved in social media is that they are a priori NOT vendor-neutral. J&J has promised CWD that that community will remain vendor-neutral, but if Big Pharma is to become more actively involved in social networking, its sponsored communities will have to become less vendor-neutral, and more our-product-is-the-best-and-only-product. This is not helpful to a patient who may require pharmaceuticals from multiple laboratories, often because one or more of the required drugs is unique to one pharmaceutical company (e.g. Byetta, Symlin) and the rest of the patient’s drugs may not be manufactured by that company (especially where cancer drugs and “orphan drugs” are concerned).
What I am seeing useful are cases where someone from the manufacturer (often a sales rep or a support rep) joins a social network, answers questions on his company’s products when they come up in the network, note the availability of those products where it is appropriate to do so, and explicitly states his professional/fiduciary interest in each post related to his employer’s products. This allows a company to provide additional channels through which to provide support and customer service (though at a less-specific level than through the manufacturer’s direct support channels), though not necessarily a way through which to capture the information to an individual customer’s account.
Great Web site!!
Pretty deep post, Amy! I’m impressed.
Have you seen the excellent write-up by Forrester Research of the famous Motrin Moms debacle? If not I’ll try to dig it out. Forrester (and the like) can be hopelessly abstract at times, but their post on that episode nailed it, as far as I can tell.
Social media is an important medium of the 21st century. Pharma companies have not warmed up to this idea because business comes from prescriptions, where social media is yet to become very influential. As such, in coming months, it is inevitable that conversations will dominate on pharma products in the digital world. And companies will be forced to pay greater attention to conversations on the web/social media/twitter/microblog and what have you. An interesting and relevant post also available at http://www.pharmaceuticalshealthcare.blogspot.com
Very interesting post. Hadn’t thought about the adverse events reporting issue. I agree with Sunil… the collective voice will only get louder and louder. They better start listening.
I agree; great post. I also ran across the following, which adds a little to the discussion about what pharma is doing (at least from a Tweeting sense): http://blog.pharmexec.com/2009/02/11/az-is-all-a-twitter/
Pharma spends a lot of money every year on market research, and I think you’ve hit the nail on the head – that it would be ridiculous to not leverage the blogging and web community for insight. When I was pump shopping, I didn’t call up the pump companies, I went online to get the facts from real people who had really used them. The bottom line is that the evolution of the market shape has changed completely, and in a very short period of time. Newpaper and other print dominated for decades, only to be trumped in mere years by podcasts, digital medial, social networking, and the general internet explosion. Pharma has operated on the same business model for years, but will have to change the way it reaches the market to embrace technology. With all of the latest laws placed on pharmaceutical sales persons: restricting access and pulling away from any interaction with physicians, digital media might be the next frontier in getting physicians info on new drugs available for their patients. We might see the whole healthcare industry online before we know it. The challenge will be maintaining the integrity of the information in a very unregulated environment.
[...] be a channel of interest for pharma, correct? Well, as Amy from Diabetesmine points out in this post, pharma is not quite ready yet to embrace twitter (and social media in general for this [...]
Great article! Got to know many things about pharmaceutical Companies. They hit the customers where they live .It’s game is to make customers believe they deserve immediate relief.
[...] a similar analysis for diabetes, comparing dlife (one of the major diabetes online communities), diabetesmine (one of the main diabetes patient blogs) and goinsulin, a very intelligent and well done diabetes [...]