Hearing patient activists and pharma and agency execs talk about connecting through social and other online channels brings to mind a room full of awkward wallflowers at a high school dance.

“Because of the regulatory environment, we’re not able to engage in a true dialogue,” Pfizer’s Todd Kolm told attendees at the e-Patient Connections conference yesterday in Philadelphia. “Instead, it’s a true monologue, and patients don’t always understand our inability to engage,” added Kolm, who is director of emerging channel strategy at Pfizer’s Consumer Center of Expertise. 

That regulatory paralysis is a drag on drug companies’ marketing metabolism, making it tough to address patient needs with fresh information in a timely manner.

“It’s ‘Break glass, submit to medical/legal, wait six weeks and then launch,'” Kolm quipped. “We need to be more real time in our ability to approve that content and to be able to respond more quickly.”

Pharmas worry about running afoul of hazy FDA guidelines regarding adverse event reporting and off-label uses of their products, to name a couple problem areas, and dialogue necessitates surrendering absolute control over your content. But there are other, more nebulous and self-reinforcing factors inhibiting pharmas from dialoguing with patients, said Communications Media Inc.’s Carly Kuper, whose pharma-heavy panel came up with seven of them, including: poor understanding of new (-ish) media; the absence of FDA guidance; a lack of senior-level pharma execs championing it; a paucity of proven success stories; the difficulty of establishing return on investment; insufficient “bandwidth” alloted; and the fact that it’s simply not seen as a must-have. 

Of course, different companies see regulatory encumbrances on their ability to engage patients through social media differently, and some are more proactive than others. 

“There is guidance today and if you internalize that existing guidance, there’s an opportunity to apply it to social media,” said Laura Kolodjeski, senior manager, patient solutions for US diabetes at Sanofi, which has, along with Roche, Boehringer Ingelheim and a handful of others, worked at establishing a real presence in the medium.

The costs of non-participation are intangible but significant, said patient bloggers. For starters, there’s the deluge of bad information about prescription drugs and the diseases they treat to be found through search and in social streams. Then there’s the disconnect between patients with chronic diseases and the companies that make the drugs they need, which breeds distrust. 

“I would just like them to listen and engage and stop being these faceless monoliths,” joked Kerri Sparling, proprietor of the hugely popular diabetes blog Six Until Me. Patients might click on a corporate site once, she said, but one-to-one communication builds sustainable relationships between patients and companies. Sparling says pharmas and device firms should be spotlighting patient voices in social media. Their halo of authenticity and accessibility could even help humanize companies.

“It’s the one spot in commerce where it just has to be the truth,” said blogger Scott Benner. “It’s like that thing in Star Trek where they try to make food and it just doesn’t look right.” 

ChronicBabe blogger Jenni Prokopy told MM&M cast the disconnect in moral terms: “The industry makes money from me being sick. I don’t think that makes them evil, but they should be listening to me.” 

Social media might be more important for pharmas as a listening post for gathering insight into patients than as an outreach channel. “Even if you’re not active in social media, social listening is critical,” said Gilead’s Tina Sampath, director of emarketing and patient marketing, “because you can go do a panel but you’re not going to get anything of the breadth and depth that you get through social listening.” But many companies, taking a strict interpretation of adverse events reporting requirements, are afraid even to set up a social media monitoring system.

Regardless of whether pharmas can get comfortable participating, conversations about their products and the diseases they treat are happening in online patient communities and social networking sites.

“A lot of companies are gun shy, but patients are out there doing it anyway,” said Six Until Me’s Sparling.