Through blogs, Facebook posts, message boards, tweets and other social media avenues, patients share millions of health care-related data each day in the virtual world, creating a real-world goldmine of information for drugmakers willing to listen and engage.

But instead of prospecting for gold in social media, many drugmakers view it as a minefield. They cautiously babystep their way around the space, trying to comply with evolving FDA regulations and avoiding inadvertent off-label promotion.

FDA violations are only one of the dangers lurking in the social media minefield. Investors are now mining the space for data to better inform their investment decisions, H.C. Wainwright & Co. analyst Andrew Fein told BioWorld Today.

Although investors have been following Twitter for a while, they’re just now sifting through Facebook posts, patient blogs and message board discussions about drugs and clinical trial experiences. In this nascent stage, Fein said the quality of the data is at its highest.

But the more such data are used, the more these venues will attract dubious players wanting to influence stock prices for their own gain. “The potential for abuse exists,” he said. For instance, a person posing as a patient could post false information about a drug on a popular patient message board.

Even when no harm is intended, patient posts – especially during a clinical trial – could affect investment. Such comments could go viral, influencing investment decisions and possibly tainting trial results. “People are paying attention” to these posts, Fein said, and those people include decision-makers for high-end funds.

Recognizing the need for caution, the investment community has to view social media data for what they are – just one more data point that needs to be balanced with the totality of data, Fein said. However, when investors read negative information about a potential new drug, it adds to their inherent wariness, which can lead to fluctuations in price and trading volume.

Case in point

Vertex Pharmaceuticals Inc. (NASDAQ:VRTX), of Cambridge, Mass., saw some fluctuation following two public threads last month on two social media cystic fibrosis forums – Cysticlife, which has more than 7,000 members, and a Facebook forum that has more than 1,000 members. Citing a study nurse or clinical staff as their source, patients used the forums to discuss three unverified events associated with phase III studies of Vertex’s VX-809, including one case of severe liver issues in an individual who may have had pre-existing liver damage.

“We do not regard the above forums as sources of easily verifiable information, and caution investors against regarding them as sources of actionable news,” Fein said in an analyst note last week. “However, we do regard them as unavoidable components of the public record today.” Because of the forums, Fein said he will pay closer attention to specific trial data for VX-809 when they become available.

On Feb. 12, the day the forum discussion began, Vertex opened at $84.54 and closed at $83.49. It dropped to $81.05 a few days later. Since Vertex had been in the upper $70s the previous week, it’s hard to say how much of a role social media played in the fluctuations that week and whether it’s at all responsible for a recent drop back into the $70s. Fein wouldn’t be surprised if the forums had some impact on the price.

Social media also presents other dangers to clinical trials. For blinding purposes, drugmakers need to keep trials airtight. While they can prevent investigators from discussing a trial online, they have no control over patients, who may be convinced they’re on the study drug and interpret their experience accordingly. And there’s the possibility that site staff could anonymously leak information about a trial via social media.

Although trial information shared online may be incomplete, inaccurate and out of context, it can still attract attention and even jeopardize the blinding of the trial, Fein said. Because of the potential dangers, biopharma needs to think proactively about how to deal with social media, recognizing that “we’re not going to shut down Facebook,” Fein said.

PATIENT EXPECTATIONS

Meanwhile, empowered by social media, patients are clamoring for drugmakers and regulators to listen and engage with them. Today’s patients are 10 times more informed about their health care and involved in making decisions than they were just a few years ago, said Ido Hadari, CEO of Treato, a firm that collects and analyzes patient data from online sources.

As a result of their newfound power, “patients have grown to expect more” from drugmakers, he said. They want quick access to information and people – and they want to share their experiences with others. Given patients’ eagerness to interact and the vast amount of data now available, Hadari sees social media as a goldmine that’s transforming health care.

“There’s a dialogue to be had in turning those patients into true partners,” he told BioWorld Today. By collecting and analyzing the comments in social media, drugmakers can better understand patient journeys with specific diseases, switching behaviors and patient satisfaction with standard of care, as well as the use, efficacy and safety of particular drugs.

“The Internet knows first,” Hadari said. Following the conversations in social media can help drugmakers respond to issues more quickly and effectively. It also could lead to better clinical trials with endpoints that matter to patients.

“The world has changed. Your drug is not being managed by the pharmacist or physician’s office anymore,” Hadari advised drugmakers. That’s all happening online now, so “you need to be there,” he added.