How Sanofi Is Writing The Social Media Rules For Big Pharma Without Running Afoul Of The FDA

After a Facebook PR meltdown two years ago, Sanofi has emerged as a social media leader with a robust community for diabetics. Here's how they are writing #TheRules while the FDA catches up.

The biggest challenge to treating patients with diabetes isn’t doling out medications, it's making sure that people control their habits. Poor diet and lack of exercise generally create complications with the disease. To combat the problems, researchers in the diabetes division of Sanofi US took an unusual step for Big Pharma: they went social, jumping into online networking with a Facebook page, Twitter presence, and eventually three different engagement platforms.

“Treatment is an important aspect to blood sugar management, but it isn’t the only aspect,” says Laura Kolodjeski, Sanofi’s diabetes community manager, who has become the virtual face of the company. “There is a huge community of people already that live with diabetes and are connecting and sharing [online] to improve each other’s experience with the disease.”

Laura Kolodjeski
Sanofi now helps direct and police those interactions online. The company won’t release total visitor numbers, but it has about 4,000 followers on Facebook and another 4,000 on Twitter, all of whom are sharing links to broader content. And for better or worse that community is going to grow: About 8 percent of Americans or roughly 26 million people have diabetes, and the Centers for Disease Control predicts that as many as one third of us could have the disease by 2050.

But the social frontier is potentially prickly for Sanofi because the FDA has not yet written the rules about how pharmaceuticals are allowed to engage with potential customers and patients. The only guidelines came out in a December 2011 advisory statement declaring that while allowing virtual comments about things like off-label uses isn't technically illegal, it's shady territory; basically, pontificate at your own risk. "We are working on the area and it's something we feel is important but we don't have a specific timeline right now," says Ernest Voyard, senior regulatory council at the FDA's Office of Prescription Drug Promotion.

For Sanofi, drawing up their own social media strategy is also a defensive move: In 2010, the company's cancer division suffered a PR nightmare after a patient, who claimed to have experienced permanent hair loss from one of their treatment drugs, posted complaints and photos on that group's unmonitored Facebook page. John Mack, the editor of Pharma Marketing News, which tracks shifts in the pharmaceutical industry, says such hits are common anytime you try to pioneer a new space. "They've had some rough times, but they are learning a lot," he adds.

Mack considers Sanofi a leader in the category, especially compared with the offerings from other companies. Diabetes juggernaut Novo Nordisk sponsors IndyCar driver Charlie Kimball to tweet @racewithinsulin, including when he injects with their products. And Pfizer's ThinkScienceNow blog about developments and advances in research is wonky but not exactly customer friendly.

Sanofi has created a template they hope will eventually be deemed both acceptable to the FDA and cool for customers. The lessons they've learned in the last two years is a valuable addition to The Social Media Roadmap from our current issue.


Be Transparent

When she took over as social media director, one of the first things Kolodjeski did was post a bio with a photo of herself online at DiscussDiabetes to show who was moderating. She also disclosed that she wasn’t diabetic. Why? To build trust, the kind community members might not have for a faceless company run by mostly non-diabetics. The message: “If Laura is going to work every day to solve [issues] on our behalf, then others must be doing the same,” Kolodjeski says.

Rather than just explain the rules of their forums in a jargon-y “terms of use” agreement Kolodjeski also tapped Mark Gaydos, head of the company’s U.S. regulatory affairs for marketed products division, to do a Q&A about how the sites would function. For instance, anytime someone on the site mentions a product, they are technically promoting it, so there needs to be fair balance of potential benefits and risks explained alongside that per FDA guidelines. That means many posts get quarantined internally before posting, so the company can add additional links or annotations to more information. Sanofi only wants to allow discussion of FDA-approved uses for products--any mention of possible side-benefits or bonuses from tweaking the usual dose regimen is prohibited. To make sure everything meets these requirements, there is often a delay--sometimes up to 24 hours--between when users make comments and those comments become publicly visible.

To explain their business interest, Kolodjeski also interviewed Dennis Urbaniak, the head of the company’s U.S. diabetes business unit to explain what he calls the “360-degree partner” principle--an effort to inspire others to talk more and tap into that as a focus group for new ideas.


Let Users Shape Expansion

Sanofi launched their diabetes Facebook and Twitter handles in September 2010 mainly to offer news updates about the company and its offerings. On Facebook, any clinical questions were directed to a separate tab and often answered privately. On Twitter, medical concerns were covered via direct message. What was missing was a way to collect various poster’s lifestyle tips and inspirational messages all in one place. In January 2011, the company launched DiscussDiabetes to address that. They also run their own stories about successes, including highlights from A1C Champions, another company sponsored group of diabetics who have maintain the best or “A1C” target range of blood sugar levels.

By March of this year, the company took a look at the discussions that were being generated and realized that terms like A1C weren’t actually as universally understood as they once thought. To speed that learning curve, they launched Diabetepedia, which provides both simple definitions and links to other sites showing how terms are actually used in other online conversations.

The final step: After noticing how activity at Diabetepedia was spiking, Sanofi launched another site collecting lots of the content they were already linking to all in one place. The DX, which launched at the end of May, hosts daily dispatches by both Kolodjeski and stable of already popular bloggers (none of whom are paid directly) that include everything from a diabetes related comic strip to mommy blogs for parents with diabetic kids. “We really allowed the community to help identify what might be useful to them and where they might go next,” Kolodjeski says.


Give Users Even More Control

The medical glossary at Diabetepedia doesn’t just provide standard definitions to complex terminology, users are encouraged to submit their own entries, creating a sort of slang dictionary that makes complicated stuff more relatable to newcomers. For instance, glucoaster: that’s shorthand for “a rollercoaster of blood glucose levels, with blood sugar lows followed by blood sugar highs.” User contributions have helped the database grow by 30 percent to include more than 150 terms, all of which make it easier to users themselves to better convey thoughts in future postings.

The company also considers each media outpost an exclusive “channel,” which means there is lots of cross-posting of content from different platforms to make sure users who only tune into one place are being best served. “We certainly have people that overlap but for the most part people have selected which channel they feel represented by and communicate through,” Kolodjeski says. But at each stop, the company still tries to crowdsource bigger ideas.

This year, they asked users to help set priorities for the company’s annual Data Design Diabetes Innovation Challenge, which asks individuals, businesses and non-profits to create new initiatives for using big data to help others struggling with the disease. To help brainstorm for that, Sanofi’s social media troop was given the chance to visit a competition homepage and answer questions about what aspects of life with the disease might be consistently overlooked or ignored. Their answers were used to shape a final guideline for contestants that solutions must address the overall wellness and family life of patients, not just symptom mediation. The winner: a program created by the n4a Diabetes Care Center that matches people with certain cost or risk profiles directly to the services they might need to slow the progression or expense of the disease. Mood problems can be addressed by better disease management, hopefully cutting into the 18 percent of all diabetics who require hospitalization each year.

After realizing just how open users are to sharing and connecting, Sanofi also launched their own new product, the iBGStar, a personal blood glucose monitor that plugs directly into an iPhone or iPod Touch with an app that saves data and maps correlations between blood sugar levels and meal times, carb and sugar intake, and physical activity. Users can share results with their family or email them to health care providers. But the product, which hit the market in May 2012, wasn’t just inspired by early community actions; ensuing reviews and comments in their own forums will help refine future updates. “It’s a big hit with the online community,” Kolodjeski says. “It’s also given us a great opportunity to prove back to them that if we hear someone comment about something, we have the ability to engage in a public manner.”

Correction: An earlier version of this article said that iBGStar came on the market in 2011, it was released in May 2012.

[Image: Flickr user Ian Humes]

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8 Comments

  • MichaelSola

    We recently were told that none of our organizations Tweets regarding Sanofi release of a new Colorectal drug would be allowed without first vetting them via their communications dept - that was "company policy" - for some reason that goes against the very concepts of Web 2.0 practices.  Trying to control the messaging of an advocacy organization is not how you engage on the social media front.  Heather Mill is right - I'm ready to send a few books if that helps.

  • dee

    for a diabetic - hypo is a term used often and shocked and disappointed it is not listed on the knock-off wikipedia site. 

  • Brandy Schmidt

    I just wish they gave the IBGStar to all users... they are going to make money on the strips!

  • Ellen G.

    Bigger picture - Biopharma is using social media responsibly to engage people with conditions to learn more and help improve care ...

  • Heather Mill

    I can say with certainty that ALL 4,000 "followers" (we tend to call them fans...) on Facebook and 4,000 followers on Twitter are not "sharing links to broader content". Read a 101 on social media engagement.