Naked Medicine

Let's Face It: Medicine is Business

Pharma Companies that Can’t Handle Comments Should Get Off Facebook, Good Riddance!

Jonathan at Dose of Digital talks about pharma’s fear of Facebook pages centering around 2 issues that pharma thinks require 24/7 monitoring: Adverse Events and negative publicity.

I hear the same excuse on why pharma companies are so scared to look at patient comments on blogs: adverse events.

I’m sorry, but adverse events are happening whether pharma companies are monitoring or not, and this is different from monitoring whether someone’s posting something “bad” about your company (newsflash: not everyone’s going to like you, better to expect it and have rules to address it than bury your head in the sand).


Adverse events are crucial for patient adherence and avoiding Facebook comments for fear of posts on AE is a missed opportunity for pharma to engage with patients in an issue that they all care about.

Patients expect drugs to work — rarely will patients want to get on a pharma page to thank the company for making a product that works. You may have a cancer patient who will do this if the company has gone above and beyond the call of duty to help the patient gain access to the drug that the patient otherwise cannot afford. But for the most part, patients have a “love-hate” relationship with pharma companies that is more “hate” than “love”, and I can’t blame patients for feeling this way.

What patients gripe about, and fear, and dread, are the adverse events.

Adverse events chip away a patient’s hope of getting better.

Adverse events erode a patient’s quality of life.

Adverse events make patients wonder, “would I rather stay ill, or deal with this horrible side effect?”

Then they look at companies avoiding discussion about something that is so key to their treatment experience, they naturally assume “profits before patients”. Never mind the realities of bureaucracy in adverse event reporting, I know it’s a bitch… the FDA knows it too.

That’s how pharma companies come across in their being so scared about Facebook.

Funny… I rarely recall pharma companies coming across scared when some of their sales and marketing teams find creative ways to fly under the radar to promote off-label. Somehow these companies are fine with breaking the law to “expand” usage of their drugs, but now they’re claiming they can’t deal with lack of guidance where Facebook pages are concerned.

Better companies pull their pages off Facebook if they are hard-headed about not allowing comments. Leave those who are more enlightened to get those patients’ eyeballs and possibly gain some goodwill.

Companies who want to control the message and behave hypocritically are doing the right thing by leaving Facebook: they aren’t adding value on the social network anyway.

Updated: June 30, 2013 — 8:04 am

10 Comments

Add a Comment
  1. Nice post, Jane.

    I completely agree with your perspective – if companies are not going to engage, then there’s really not a lot of point being on Facebook. We’re all tired of push marketing practices. Social media is social by definition, doh!

  2. Thanks Sally! I’m interested in @FDALawyer’s tweet about reasons for AE problems.

    I think what the Facebook page requirement is showing is pharmaco’s true intention in social media. If it is about engaging and connecting and having a meaningful conversation, then requiring comments is prerequisite for this to occur. Yes, sometimes it means an adverse event will pop up, that pharma has to deal with.

    I also love your tweet:
    “@FDALawyers @JaneChin the number of reportable AEs that meet the criteria are v low but the excuses are relatively high”

    Agree on the excuses!

    Patients aren’t stupid, neither is the FDA (although yes it may be sloooooooooooooow and equally avoiding of hard issues).

  3. Hi Jane,

    Iā€™d like to think the mass Facebook exodus of Pharma companies that some are anticipating is not going to fully materialize. Call me an optimist, I suppose.

    It may simply be a case of Pharma needing to regroup and formulate a new plan of attack. Many Facebook withdrawals may be temporary until new strategies (eg. dealing with Adverse Event reporting) are ready to roll out.

    It seems a shame for a company (in ANY industry) to spend time cultivating a following on a popular site like Facebook only to step away when the going gets a bit rough.

    Good post!

    Jason Boies
    Community Engagement, Radian6
    @Radian6

  4. Thanks Jason!

    @FDALawyer brings up a good point about difficulty in establishing causation of adverse events:
    https://twitter.com/#!/FDALawyers/status/103215178488889344

    I don’t dispute this. The problem is that patients are already “sharing” their adverse events experience all over the internet. I’ve seen this in my own blog. Avoiding the difficulty of establishing causation by turning a blind eye (not just with Facebook, but by instructing employees not to monitor the internet or social networks for patient experience with the drug, for example) looks like it makes sense right now, but you end up encouraging pockets of negative user experiences that are never addressed or acknowledged. Patients can more easily do an internet search for an experience with a drug than call their doctors.

    Another problem pharma faces is “why are we here” — anywhere on a social network. Some companies may get on just because other companies are getting on a social network, they don’t want to “miss out” even as they don’t necessarily know why they want to participate in social media. So they don’t really “participate”, they disseminate.

    This is a problem that no amount of regrouping is going to solve. It requires companies to become willing to engage on the internet that can’t be scripted all the time, which means companies become vulnerable to gaffs, mistakes, and appearing all too human.

  5. Please KNOW before you bash!

    Not sure who to address this comment to ā€“ Jonathan or Jane ā€“ since there is no “author” officially disclosed in the article, nor a publish date. This post could be years old for all I know, but as it happens, I’ve come across this post in a search for something else and felt the responsibility to provide some “fair balance” to this one-sided criticism of why pharma has not embraced the social space.

    Long and short of it is the “monitoring” that you are referencing in this post has less to do with Pharma being concerned about what patients are saying, (they know EXACTLY what their patients and customers think about their products) and more so about the reality that the FDA requires marketers of prescription drugs to manage all that is being said about their approved products. That’s right, even if a patient’s opinion, the pharma companies are the ones who will be accountable if what the patients says is untrue or mentions a benefit outside of what the product is indicated for if that mention is found on a page that is officially sponsored by the marketing company.

    As a patient, If I choose to voice my opinion about the performance of a particular therapy on my personal social page, that’s fine. But if I post something that is an over promise on a page that is created by the marketing arm of the drug company, then they are responsible and liable. That’s right… Lawyers… Again!

    We all know that Pharma get it’s share of negative press, but the fact remains, every person who has ever taken a product, chooses to do so. Regardless of the type of therapy, symptomatic or chronic, the choice to go on therapy ultimately resides with the patient. Let’s not forget that. Physicans recommend. Patients choose. This fact also applies to my father who is currently battling cancer.

    I know for a fact that many pharmaceutical marketers are looking to embrace the social space, but the reality is that the FDA has created an environment akin to navigating a mine field.

    If other industries, (the social space for example) were required to operate under the same oversight that the pharmaceutical industry does, everyone would be crying foul, citing first amendment rights, and it is very likely your original post would have been flagged for publishing. Think on that.

    So before you jump on the band wagon (or at the very least, agree with Jonathan) and bash pharma, I recommend you look into the Federal Code of Regulations, and try to better understand the environment of promoting prescription drugs.

    Note: The paid sponsors of your site include:
    VIAGRA as well as Lasik Denver

    Rich D’Ginto
    Creative Director

  6. Thanks for your comment and provision of a counter point to my original post, Rich.

    My post is specific to Facebook, because Facebook as a service as its own Terms and therefore anyone signing up to use Facebook as a social “space” abides by those terms. I totally understand the “regulated speech” that is the norm of pharma space and I’m not saying that pharma should let comments run however comments run by whoever is posting. However, I’m looking at Facebook as a platform that pharma wants to use for whatever purpose, and if pharmacos think that Facebook’s terms aren’t feasible, they have the option not to have a presence.

    That said, my “bashing” pharma has more to do with the double standards of pharma marketing as it relates to the code of federal regulations — since you bring that up and I note that in my original (2011 so yes it is way back) post. I have worked in pharma as an employee. I know and many pharma employees will admit, that we all know what the “rules” are when it comes to pharma marketing, and how our speech is all regulated by CFR — what we can and cannot say, how we should say it. Yet pharmacos routinely ignore these. It is harder to catch because people aren’t being followed with video recorders or audio recorders and statements aren’t recorded that can very well be perceived as violations of CFR around commercial speech.

    I defend pharma’s value as a contributor to healthcare and I do not believe pharma as an entity are “the dark side” or “evil” especially when I choose to work with it. Yet I cannot defend the totality of pharma’s practices when it comes to sales and marketing practices whether this be in the trenches/field in front of healthcare practitioners or in the “social media space” although I think pharma is very cautious in SM space because everything is recordable and permanent.

    As for the ads, I have no control over those other than submitting this site as a “advertising space.”

  7. I’ll post this as a new comment thread, because I’d like to address both the post itself, and the comments already extant.

    First, the post itself is 100% correct in its call for pharma companies that are not willing to allow comments on their FB pages to leave FB. They should. Frankly, they’re wasting time and treasure on FB if they are *not* willing to fully engage there by having two-way conversations.

    Rich, the consumer is indeed in charge in the pharma space, as well as in every other industry. HOWEVER, when the massive amplifier that is the “ask your doctor about …” advertising juggernaut is added to the perceived expertise of a prescribing physician, just how many consumers do you think will rise up on their hind legs and question either the safety or efficacy of the prescribed drug? Particularly when it’s prescribed for a chronic condition like diabetes, RA, MS, or a player to be named later? The pharma industry in the US, and in many other countries, is in an arms race to get that next “killer app” to market. Their focus, as an industry, is mostly on research with high ROI potential, not on actually helping the end-user. Helping the end-user is an additional side benefit to convincing physicians, and the public, that what they’re flacking is what is critically necessary for their health, or even their survival. The truth can get ground under those big tank treads.

    Jane, I don’t disagree that the great majority of the folks who work in pharma – scientists, researchers, sales people, and everyone else – are hoping to make a difference. My issue with pharma, as an industry, is that chase-the-next-killer-app mentality vs. a true “are we helping, and how can we help better?” mentality. Which, as an industry, is not the perception outsiders have of pharma. And, unfortunately, I think that even inside pharma, in the aggregate, everyone gets harnessed to the quarterly reports and not to the “are we helping? really?” outcomes.

    I blame the FDA for much of what’s wrong in pharma, too. The regulatory/approval process is byzantine, and there is SO much money poured into the legislative branch via K Street that there are a whole host of thumbs on the scale. The entire process is broken. It, along with the entire healthcare delivery system in the US, needs a robust cycle of creative destruction. I may be just an outraged villager with a torch and a pointy stick, but I’m in for the long haul on that creative destruction …

  8. Casey — I agree that the whole “blockbuster” mentality (what you call “chase the next killer app” mindset) is part of what is broken. I think there is at least a slow movement toward “niche” drugs or some influence of “personalized medicine” to the extent that today this only means diagnostic tests that suggest whether a patient is a responder or a non-responder. Maybe this movement is too slow, especially because this is more difficult to create market projections that wall street loves so much.

    If I’m looking at the way the industry is fragmenting now — big pharmas tend to gobble up specialty pharmas or startups to acquire the technology / innovation while providing the marketing arm. In the past I thought there was more of a push toward startups aspiring toward a vertically integrated pharmaco status but now the costs have become too prohibitive for this to happen. As a result, eventually all small companies come to an end by M&A by a member of the biopharma industry. Then what happens? You start having more overhead because now the company size is larger, which means more costs, which means more pressures to sustain business, which means a greater push to sell one drug to as many patient types as possible where the economies of marketing scale can work.

    I also blame the FDA because they can get away with what’s wrong in pharma while continuing to exacerbate what’s wrong in pharma.

  9. All in service of a buck-chase, with actually helping people be healthier arising as an afterthought, if at all. The FDA could, if it was really interested in public health, concentrate more on making the “F” in their acronym safer and healthier. IOW, real food vs. the processed crap that they’ve allowed (encouraged?) to become so widespread, which has in turn led to an epidemic of obesity and diabetes, which has in turn led to … more hunting for blockbuster/killer-app pharma. An obesity drug was just approved this week, in spite of some serious questions about its safety.

    We’re Cro Magnons with smartphones. If we ate like Cro Magnons, and moved around more like Cro Magnons, there’s less likelihood we’ll die under a pile of convenience-food containers …

Leave a Reply

Your email address will not be published. Required fields are marked *

Naked Medicine © 2016 Frontier Theme