Patients, pharmas fail to connect online

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Kerri Sparling
Kerri Sparling

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,” director of emerging channel strategy at Pfizer's Consumer Center of Expertise Todd Kolm told attendees at September's e-Patient Connections conference in Philadelphia. “Instead, it's a true monologue, and patients don't always understand our inability to engage.”

That regulatory paralysis is a drag on drug companies' marketing metabolism, making it tough to address patient needs with timely, fresh information. “We need to be more real time in our ability to approve that content and to be able to respond more quickly,” Kolm said.

Pharmas worry about running afoul of hazy FDA guidelines regarding adverse event reporting and off-label uses of their products, to name a few problem areas, and dialogue necessitates surrendering absolute control over your content. But other, more nebulous and self-reinforcing factors inhibit 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”; and the fact that it's 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. First, 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. 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. ChronicBabe blogger Jenni Prokopy cast the disconnect in moral terms, telling MM&M: “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.

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.
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