FDA issues may deter drugmakers from engaging in social media, but that’s no excuse to ignore what audiences are saying on these platforms, say pharma and device firms.

“You cannot put your head in the ground like an ostrich and pretend dialogue is not happening, because it is,” said Pat Choumitsky, senior manager, consumer marketing, UCB Pharma.

Speaking Monday at the Pharmaceutical Marketing Research Group (PMRG) 2012 Annual National Conference in Orlando, Choumitsky said UCB listens to patient-reported outcomes on PatientsLikeMe.com. Being involved in the online patient community has helped the firm, which focuses on epilepsy and immunology, to shape its clinical trials and messaging. “It’s important that we’re listening and not afraid of adverse events.”

UCB is one of several healthcare manufacturers beginning to tap into social media as a form of research, to find out how communities feel about brands and the conditions they treat, even to provide appropriate information. This form of engagement often takes the form of listening, rather than talking.

Respondents to the State of the Industry (SOI) survey, developed in collaboration with TGaS Advisors and an advisory committee of the PMRG representing all its constituencies (drug and device firms as well as suppliers/consultants), predicted that use of social media for research by companies would increase this year. (Click here for MM&M’s summary of the SOI results.)

This trend was a major topic of conversation at the conference. In general, new methods of collecting input are in their “ascendance,” as one speaker put it, while traditional ones are under threat. Researchers are integrating these new modalities into their tool kits as a way to satisfy customer demand for insight, wherever that insight resides.

Benefits extend beyond conventional research. “Unlike traditional MR, which offers a one-shot opportunity to find out what patients are thinking about a marketing program, [social media] allowed us to ask deeper and deeper questions to understand what the motivators are,” said Choumitsky, whose firm not only listens to patient discussions passively but has actively engaged patients in two to three market research activities per week in an iterative fashion.

She added: “We did a DR [direct response] television commercial a way back. Had we gone out with what our original marketing was for patients, we would have been off the mark…Rather, we listened to patients passively.  And we heard something, a nugget of information, that…helped us narrow the field.”

Another company, Medtronic, found that patients were more interested in the opinions of others who had undergone treatment with neuromodulation therapy (an area where the device firm has a commercial stake), in addition to whatever had been discussed with their physicians. The insight came out of monitoring blogs, message boards and YouTube. The firm did nothing to propagate discussions, said Jill Glathar, a VP at National Analysts Worldwide, who helped conduct the research.

Sanofi is another firm harnessing social media in this capacity.  “We had an instance where a patient double-dosed on [diabetes drug] Lantus,” said Todd Francis, VP and head of commercial support and enterprise marketing, Sanofi US. “Our passive listening and ability to form a partnership allowed us to engage that patient so she could seek immediate treatment.”

The “positive customer sentiment” from the episode provided the company with a platform to engage on a broader scale, said Francis. “So we’re participating in the dialogue. This isn’t promotion. We do a fair amount of promotion. We don’t want to do this to be the Trojan horse of this space.”

Indeed, social media values authentic two-way communication, but this is often incongruous to FDA-regulated companies. Case in point: Last week Janssen shut down its “Psoriasis 360” Facebook page. The firm was the latest among several drugmakers to do so following the social network’s decision to enforce rules requiring corporate-run pages to allow comments. (Some have kept pages open, despite the network’s open walls.)

Janssen’s move was “like setting up a Twitter account and shutting it down because people are sending [in] comments. There’s a disconnect,” said another speaker at the conference, Mark Bard, co-founder of the Digital Health Coalition, a non-profit think tank that’s trying to forge a path for the pharma industry to engage with customers on these platforms, despite a lack of clear regulatory guidance from the FDA.

Pharma is hesitant to embrace the interactivity of Facebook and Twitter for fear of being seen as fostering off-label discussion of products or of being exposed to adverse-event (AE) reporting requirements—two enforcement areas for the FDA , said Arnie Friede, a former lawyer for the agency who specializes in healthcare marketing regulations.

Industry needs to differentiate as to when a company becomes responsible for certain activities, said Friede: “[Is] providing a platform enough to convert something into advertising? Is listening into someone else’s platform different? How do we differentiate those circumstances?”

Listening and speaking confer different obligations, but just listening does not necessarily absolve the firm of the responsibility to report AEs. UCB’s Choumitsky said the firm works with a number of firms that “scrape” conversations patients are having online and identifies keywords that could raise issues. “We pull those down and review them” for anything considered risky or an AE, she said. “We do that on our properties.”

Studies show that the rate of AEs is about 2-3% of all comments.

In listening, she even sees an opportunity for pharma to win back trust from patients. “If we’re really going to have an authentic voice—and pharma has a lot to overcome where patients are concerned; there’s this perception of ‘the big bad pharma company.’ In actuality, we have the ability to listen and enable better healthcare and empower patients. If we’re not listening authentically, and if we’re not being open, we’re sending a message that ‘we really don’t want to hear from you.’ We’re reinforcing something that’s not really true.”

Then again, marketers are still trying to understand the role that market research can play in the social media space. “We continue to struggle at Sanofi with, what is digital?” acknowledged Francis. Social media, he said, is “forcing us to rethink how we approach research and what role does active social listening play in…[taking the place of] traditional market research.”