Nearly half of pharmaceutical companies can be found on social media websites according to a report by IMS Institute for Healthcare Informatics, but most use their accounts as a broadcasting channel with very little interaction with patients and doctors.

“We think it’s essential that they find a way to engage,” Murray Aitken, executive director of IMS Institute for Healthcare Informatics and one of the authors of the report, told BioWorld Insight. “It’s where the patients are.”

A lack of guidance from the FDA is one of the biggest reasons drug makers have been slow to embrace social media. The agency issued draft guidance on the use of social media earlier this month with final guidance expected by July. (See BioWorld Today, Jan. 14, 2014.)

Beyond the U.S., companies must deal with regulations in other countries, which can be tricky since the Internet has no borders.

Adding to the complexity, monitoring and interacting with patients on the Internet can open drug companies up to responsibility of additional reporting of adverse events.

But Aiken said the regulatory uncertainty isn’t “a valid reason to stay on the sidelines. There’s always going to be grey areas. Social media is ever changing so regulators will never be able to fully keep up.”

With a lack of measurements for success, it can be hard for companies to know whether their investment in social media is producing substantial returns on investment. Aiken suggested that company’s social media activities shouldn’t be viewed as a standalone part of the commercial structure but in the context of the overall marketing campaign.

Despite the uncertainty, some companies have tested the waters with a trial-and-error approach. IMS Institute created a Social Media Engagement Index measuring companies on their reach, relevance and relationships. Of the 50 largest drug companies, Johnson & Johnson Co., of New Brunswick, N.J., topped the list, followed by London-based Glaxosmithkline plc. and Novo Nordisk A/S, of Bagsvaerd, Denmark, rounding out the top three.

Johnson & Johnson and Glaxosmithkline have consumer health divisions where engagement may come with less regulatory risk, which might give their prescription drug counterparts a leg up. Companies with narrow therapeutic focuses also tended to have high levels of social media engagement. “Smaller companies are more likely to take some risk and see what does and doesn’t work,” Aitken said.

Ironically, without any fear of wrist slapping from itself, the FDA is more engaged with the health care audience than most pharmaceutical companies. If included in IMS Institute’s rankings, the FDA would rank in the top three for each of the three index measurements.

While not typically thought of as social media, IMS Institute did extensive research on Wikipedia since it’s a website with user-edited information that patients and doctors often turn to first because the pages rank high in web searches. The top 100 Wikipedia pages for health care topics were viewed an average of 1.9 million times each over the last year.

Researchers found a high correlation between IMS prescription data and visits to Wikipedia sites for many diseases. The spike in visits to a disease website could come before, after or at the same time as a spike in prescriptions for drugs treating that disease. The timing correlated with the average age for patients with the diseases: 39 years old for diseases where Wikipedia visits came before prescriptions and 54 years old for diseases where treatment came before Wikipedia visits.

The difference suggest that younger people are doing research before seeking treatment while older people are getting treated and then seeking information online afterward, giving companies an idea of when they should be engaging patients on social media.