Social Media Wiki

How to Make the Social Media Risk Worthwhile

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There’s no question, some risks just aren’t worth taking. Naturally, the reward should justify the risk. This is especially true in the land of pharma and healthcare marketing. The regulatory and legal folks at these companies really have a simple job at the end of the day: figure out if this promotion/concept/message/etc. is worth the risk. Yes, I recognize their jobs are, in fact, much more complex, but this  is what it comes down to. So, to be sure that the company can answer “yes” to this challenge, the regulatory and legal folks make changes, require new messages, increase fair balance, and sometimes outright deny permission to try something. Many times this is keeping marketers from getting the company into hot water (whether we really believe it is or not). Sometimes, however, we (adding myself in here as a former pharma marketer) don’t understand the reasons and think that some “rulings” just aren’t necessary. 

Unfortunately, this is the name of the game. In a highly regulated environment, this will always be the case. The question then becomes: can we make the risks justifiable? That is, can we create something so meaningful and where the benefits are so clear, that almost any risk is justified? I think the answer is “yes,” but only in certain cases. Now to further complicate things, I’m going to talk about a social media applications and not, say, a print ad. I can sense the regulatory people getting nervous already.

Josh Bernoff, Forrester Senior VP and co-author of Groundswell, developed a report that spoke precisely to this issue. He called it, with all seriousness: “How to create a social application for life sciences without getting fired.” Josh presented the main ideas found in the full report at the recent HealthCampBoston meeting. You can download his slides here. There’s a lot of good information in his presentation, but I latched onto one specific piece and this is what prompted this post.

Through his research, Josh discovered a couple things. First, no surprise, people with some diseases use social media more than others. This doesn’t come as a major surprise when you consider that certain diseases are more prevalent at certain ages. For example, those with osteoporosis tend to use social media among the least of any disease. This makes sense when you consider that most of these people are older and there are plenty of studies that show they use social media the least of any age group. Contrast this with people with depression or anxiety, which is more prevalent in younger populations who use social media more often. That’s part one.

The second part was a somewhat subjective judgement on which diseases would benefit the most from social media. That is, which people with which diseases would get the most out of connecting with others in a similar situation? Which are most open to talking about their condition and seeking help from others? Josh called this the “Social Benefit.” Consider people with erectile dysfunction versus those with cancer. There are support groups and thousands of online discussions for cancer, but nothing for erectile dysfunction. This was the second part. 

When you combine these two parts together, you end up with this:

forrester social pharma

You can quickly see where the most common diseases end up on the scale. You can also see where the most potential lies; the upper-right quadrant that Josh called “Misery Loves Company.” To relate this back to your regulatory team, if you’re focused on a condition in the upper-right, your argument is simple. There’s a great need for social media applications for these patients and it’s also likely that they’ll engage with something good if you create it. The risk is worth the potential rewards. On the other hand, if you’re working on a drug to treat a thyroid condition that likely won’t benefit patients in a meaningful way and the target patients aren’t likely to use it, why take the risk?

I’ll take Josh’s report one step further and cross-reference this with the Pharma and Healthcare Social Media Wiki that is housed on this blog. In Josh’s presentation, he includes a handful of examples (all of which were included on the Wiki) of social media programs that are already out there. I don’t claim to have every healthcare social media program in existence on the wiki, but there’s a pretty good number. If I’m missing something, let me know. So, based on my research, here are some observations:

  • Looking at the conditions in the upper-right quadrant, only two diseases have any sort of social media applications: obesity and depression/anxiety (and other mood disorders, which I’m including together with depression/anxiety). Of these, obesity is best represented with sites like Obesity Help and also, alli Circles. The entire category of psychology-related diseases covered by only one example, Psych Central.
  • Two of the diseases (diabetes and cancer) in the upper-left quadrant are very well represented on the Wiki. While high blood pressure and arthritis are not.
  • There are multiple sites for diseases in the lower-left, where there should be the lowest overall benefit and usage (i.e., the highest risk). These include programs for “gastrointestinal” such as the multiple programs for Crohn’s disease including Crohn’s and Me. 
  • A number of diseases not on Josh’s list have multiple sites including multiple sclerosis, which has four sites on the wiki.

What does all this mean? If you’re a healthcare marketer, you need to figure out where there are big gaps that you can help fill in and where you should steer clear of social media. I’ve broken the the diseases down to Yes, Maybe, and No. “Yes” meaning do a program now. There’s a big need and also limited competition. “No,” as always, means no. You should avoid these areas. The competition is either too high or you’re likely not to have anyone interested in your program. “Maybe,” means that either there’s a need and a bit of competition or that there’s less of a need, but no competition. You’ll have to figure out if it’s worth it. I included a little rationale with each “maybe.”

So, by disease state:

  • YES: Sleep disorders, chronic pain, migraines, skin disorders, any mood disorder, and/or depression/anxiety
  • NO: High blood pressure, erectile dysfunction, thyroid condition, congestive heart failure (CHF), bladder and urinary conditions, walking disability, osteoporosis, and gastrointestinal
  • MAYBE: Cancer, diabetes (both competitive, but a high need), asthma (limited need, higher social media usage), arthritis (no competition, limited social media usage).

One caveat…every brand is different. For example, if you’re brand is targeted to younger folks compared to the average drug in your class, then maybe you’d be more likely to try something in social media. Also, be sure to take a look at the competition out there. If there’s already a strong community or channel out there for your disease state, instead of competing for patients, can you instead find a partnership? Overall, for you marketers, I hope this gives you a little more rationale when you’re talking to your regulatory and legal folks about why a social media program is necessary. On the other hand, a lot of these regulatory people also read this blog, so they’ll be ready when you come to them and try to sell a program for your thyroid treatment.

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About The Author


Jonathan Richman

Jonathan Richman

Jonathan is the creator of Dose of Digital. You can find him on Twitter and here's his official Google+ profile.


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  • Chris P

    One of the risks has been AE monitoring. With diseases like Cancer, the AE rates might be pretty high and require aggressive and potentially unpleasant reporting. With sleep or pain, what kind of risks are there? If rare and critical risks appear in the social setting, would that push the manufacturers to stay away from this kind of work?

    • http://www.doseofdigital.com/ Jonathan Richman

      Thanks for leaving a comment, Chris. AE monitoring is the quick excuse that many companies use to dismiss social media as a channel. Few really know the actual data. I did a post on this called The Myth of Adverse Event Reporting, which found that fewer than 1 in 500 posts on health discussion boards had all the required elements to be classified as a reportable adverse event. Combine this with simple ways to moderate and manage the debate and this issue should go away. The reality is that people are turning more and more to these social settings, so simply ignoring them isn’t going to be an option for long.

  • Chris P

    One of the risks has been AE monitoring. With diseases like Cancer, the AE rates might be pretty high and require aggressive and potentially unpleasant reporting. With sleep or pain, what kind of risks are there? If rare and critical risks appear in the social setting, would that push the manufacturers to stay away from this kind of work?

    • Jonathan Richman

      Thanks for leaving a comment, Chris. AE monitoring is the quick excuse that many companies use to dismiss social media as a channel. Few really know the actual data. I did a post on this called The Myth of Adverse Event Reporting, which found that fewer than 1 in 500 posts on health discussion boards had all the required elements to be classified as a reportable adverse event. Combine this with simple ways to moderate and manage the debate and this issue should go away. The reality is that people are turning more and more to these social settings, so simply ignoring them isn’t going to be an option for long.

  • Lynn Nezin

    Johnathan: You mention “simple ways to moderate and manage the debate” and I think describing these methods will be instrumental in creating the necessary comfort zone for pharma within the social media environment.
    I think there are also alternative segmentation strategies with which to classify healthcare consumers that take into account disease severity, numbrer and quality of treatment options, and social stigma associated with the disease. Obesity is a rich target for social media because the obese are subjected to societally-sanctioned bigotry. This makes a virtual environment more welcoming, at so many levels, not the least of which is physical comfort without size restriction.
    I would urge marketers to pursue solutions to oversight that work well without adversely altering the social media environment, and then work harder to identify the segments who would most readily embrace social media as part of their disease/health management behaviors.

  • Lynn Nezin

    Johnathan: You mention “simple ways to moderate and manage the debate” and I think describing these methods will be instrumental in creating the necessary comfort zone for pharma within the social media environment.
    I think there are also alternative segmentation strategies with which to classify healthcare consumers that take into account disease severity, numbrer and quality of treatment options, and social stigma associated with the disease. Obesity is a rich target for social media because the obese are subjected to societally-sanctioned bigotry. This makes a virtual environment more welcoming, at so many levels, not the least of which is physical comfort without size restriction.
    I would urge marketers to pursue solutions to oversight that work well without adversely altering the social media environment, and then work harder to identify the segments who would most readily embrace social media as part of their disease/health management behaviors.

  • http://jamiefavreau.wordpress.com Jamie Favreau

    I like your analysis of the situation. I think with cancer if the patients could have a safe place to have a cancer survivor group. Sort of like what LLS does with their patients just an online version. This virtual support system could help between meetings! When sometimes you hit a rough point and need someone to talk to when your family isn’t home or if you need to talk to someone or if you are not ready to commit to your situation. Maybe you’re a cancer patient and you are too terrified to speak but you want to remain anonymous.

  • http://jamiefavreau.wordpress.com/ Jamie Favreau

    I like your analysis of the situation. I think with cancer if the patients could have a safe place to have a cancer survivor group. Sort of like what LLS does with their patients just an online version. This virtual support system could help between meetings! When sometimes you hit a rough point and need someone to talk to when your family isn’t home or if you need to talk to someone or if you are not ready to commit to your situation. Maybe you’re a cancer patient and you are too terrified to speak but you want to remain anonymous.

  • http://intouchsolutionsdigital.blogspot.com/ WendyB

    A good post and good discussion Jonathan. We’ve talked a lot about which disease states and products are social-ready and which aren’t. It’s absolutely a critical discussion when planning a brands’ digital strategy. Maybe I’m dealing with tougher medical/legal/regulatory teams, but in my experience, you can talk about patient benefit to those teams until blue in the face … and they rarely care. Sadly, the regulators (FDA included) seem to care less about what you are doing for patients’ benefit and instead focus more on that what you’re doing won’t harm or mislead them. There is a subtle difference there. A good example is the recent rash of search warning letters [see http://tinyurl.com/cbpqbq. By issuing these letters, DDMAC is further restricting pharma from branded search advertising … leaving the fake Viagras and dangerous herbal remedies to have free reign over those search results. Is that what’s best for consumers?

    Even if you create a great patient community for the “right disease,” there is still unfortunatly a great amount of risk that consumers will post unapproved claims – good or bad. What FDA hasn’t been able to answer is, is that company still liable for those claims? Until they (publicly) say “no,” pharma regulatory reviewers assume the answer is “yes.” And therefore they’re pretty sure they’re still going to get fired for it.

    WendyB’s last blog post..Working with Agencies: What’s the Right Approach?

  • http://intouchsolutionsdigital.blogspot.com/ WendyB

    A good post and good discussion Jonathan. We’ve talked a lot about which disease states and products are social-ready and which aren’t. It’s absolutely a critical discussion when planning a brands’ digital strategy. Maybe I’m dealing with tougher medical/legal/regulatory teams, but in my experience, you can talk about patient benefit to those teams until blue in the face … and they rarely care. Sadly, the regulators (FDA included) seem to care less about what you are doing for patients’ benefit and instead focus more on that what you’re doing won’t harm or mislead them. There is a subtle difference there. A good example is the recent rash of search warning letters [see http://tinyurl.com/cbpqbq. By issuing these letters, DDMAC is further restricting pharma from branded search advertising … leaving the fake Viagras and dangerous herbal remedies to have free reign over those search results. Is that what’s best for consumers?

    Even if you create a great patient community for the “right disease,” there is still unfortunatly a great amount of risk that consumers will post unapproved claims – good or bad. What FDA hasn’t been able to answer is, is that company still liable for those claims? Until they (publicly) say “no,” pharma regulatory reviewers assume the answer is “yes.” And therefore they’re pretty sure they’re still going to get fired for it.

    WendyB’s last blog post..Working with Agencies: What’s the Right Approach?

  • http://blogs.forrester.com/groundswell Josh Bernoff

    Thanks for your analysis, Jonathan. In the context of Chris P’s comment, I think companies need to move beyond “Oh no there is risk” to “What is the benefit, what is the risk, is it worth it, and how will we manage those risks.”

    AE reporting is a good example. Your 1 in 500 number is going to be different for a drug that’s been out a while vs. a new one — the former will have less risk.

    Hope to hear more from social application providers and pharma companies.

    P.S. thanks for maintaining the wiki, what a great resource.

    Josh Bernoff’s last blog post..What should NBC and Subway do about the “Save Chuck” campaign?

    • http://www.doseofdigital.com/ Jonathan Richman

      Wendy, Great comment (as usual). You’re not dealing with tougher medical/legal/regulatory teams…I think for the most part we’re in the same boat. However, there are a few companies that are a bit ahead. We do get to work with one J&J pharma company (Centocor Ortho Biotech) and this is a different experience. J&J has a social media policy and a way for brand teams to go about it and get approval. Just having a process is a big advantage. Perhaps that’s why J&J companies have done so many things in the social media space.

      Thanks for commenting, Josh. I’d tie your comment back to Wendy’s and agree that we should try to reframe the question as you recommend: “Move beyond ‘Oh no there is risk’ to ‘What is the benefit, what is the risk, is it worth it, and how will we manage those risks.’” That’s really what regulatory teams do with everything else, but for some reason they take a tougher stance with social media. So, perhaps this reframe is one approach to moving regulatory teams forward. (Thanks for the feedback on the wiki, stay tuned for the Digital Data Bank.)

  • http://blogs.forrester.com/groundswell Josh Bernoff

    Thanks for your analysis, Jonathan. In the context of Chris P’s comment, I think companies need to move beyond “Oh no there is risk” to “What is the benefit, what is the risk, is it worth it, and how will we manage those risks.”

    AE reporting is a good example. Your 1 in 500 number is going to be different for a drug that’s been out a while vs. a new one — the former will have less risk.

    Hope to hear more from social application providers and pharma companies.

    P.S. thanks for maintaining the wiki, what a great resource.

    Josh Bernoff’s last blog post..What should NBC and Subway do about the “Save Chuck” campaign?

    • Jonathan Richman

      Wendy, Great comment (as usual). You’re not dealing with tougher medical/legal/regulatory teams…I think for the most part we’re in the same boat. However, there are a few companies that are a bit ahead. We do get to work with one J&J pharma company (Centocor Ortho Biotech) and this is a different experience. J&J has a social media policy and a way for brand teams to go about it and get approval. Just having a process is a big advantage. Perhaps that’s why J&J companies have done so many things in the social media space.

      Thanks for commenting, Josh. I’d tie your comment back to Wendy’s and agree that we should try to reframe the question as you recommend: “Move beyond ‘Oh no there is risk’ to ‘What is the benefit, what is the risk, is it worth it, and how will we manage those risks.’” That’s really what regulatory teams do with everything else, but for some reason they take a tougher stance with social media. So, perhaps this reframe is one approach to moving regulatory teams forward. (Thanks for the feedback on the wiki, stay tuned for the Digital Data Bank.)