They’re dream advocates for pharma companies and the marketers who work there: patients who aren’t just engaged in their own courses of treatment, but also mete out advice to others in disease- and condition-specific digital communities. Other patients listen to them, follow their advice and actively seek their counsel. When they speak up, pharma pays attention.

The results of WEGO Health’s most recent Patient Leader Landscape Survey offer perhaps the most useful and relevant snapshot of the views, ideas and preferences of this influential audience. Conducted via an online survey tool in June, the Landscape Survey was completed by 520 patient leaders, defined by WEGO as “people who are higher than average in terms of health activation and overall levels of engagement,” in the company’s wide-ranging network.

Women comprised 63% of the respondent cohort and men comprised 37%. Twelve percent of respondents reported that they “contribute to the online health community” on a daily basis, with 8% saying they contribute at least two times every day and 43% reporting they contribute every week. Twenty-two percent of respondents said they spend more than five hours a day on social media; 26% said three to four hours and 50% said one to two hours.

The goal of the survey, according to WEGO chief strategy officer David Goldsmith, was to “pick up signals” from this hyper-connected audience. “We’re trying to get at what these people, who are so engaged and spending a tremendous amount of time on social media and in these communities, are doing and thinking that might be different than what they did in the past,” he explains.

A handful of the survey’s results were more or less in line with conventional wisdom. Asked which health-related website they prefer to recommend for general health information, patient leaders pointed to the Mayo Clinic (25%). Everyday Health ranked close behind at 23%, with WebMD trailing behind at 17%.

Similarly, despite warranted hype about health-specific organizations like Inspire and The Mighty, Facebook remains the social-network alpha dog. Thirty-seven percent of patient leaders said they prefer to recommend Facebook to patients looking to connect with others via social networking. Twitter followed with 27%, Inspire was next with 13% and Instagram ranked fourth with 10%.

“Facebook is the dominant player,” Goldsmith states flatly. “It continues to be the destination people are gravitating to, despite all the frustrations with and misgivings about its business model.”

It’s possible that those frustrations, especially vis-à-vis the haphazard handling of personal data by Facebook and others, have been overstated. Among the Landscape Survey’s most surprising findings was that a whopping 75% of respondents said they would be willing to share more of their personal health data with pharma companies in exchange for better and more personally relevant information. Nine percent of respondents said they weren’t willing to do so; 17% said they weren’t sure.

“These are people with multiple comorbidities, who are on multiple medications and have lots of complexity surrounding their health and healthcare decisions,” Goldsmith says. “[The result] reflects that they’re willing to give up more information about themselves for anything, whether it’s a doctor discussion guide or something else, that helps them be smarter about managing their conditions.”

While the Landscape Survey revealed a higher-than-expected degree of satisfaction with traditional pharma TV ads – 25% of respondents described them as “extremely relevant,” 27% as “very relevant” and 23% as “somewhat relevant” – Goldsmith cautions against reading too much into those figures. Instead, he suggests that pharma companies keen to appeal to patient leaders continue to bolster their digital presences.

By way of explanation, he points to the survey’s findings about social engagement: 85% of respondents reported that they follow HCPs or hospital systems on social media, but only 68% reported that they follow pharmaceutical companies.

“What people are saying, basically, is ‘Look, all I’m getting from you in a TV ad is encouragement to have a conversation with my doctor. If you’re making all this money and you have all these resources, then do more for me,’” Goldsmith says. “If pharma companies want more engagement, they would be wise to start providing people with resources and helping them manage some aspect of their health… There are big gaps in the system in terms of helping people.”

That’s why subsequent WEGO research efforts are likely to examine similar issues on a condition-by-condition basis (“not just ‘patients writ large have these views on these topics,’” Goldsmith notes). He points to migraine headaches as a logical place to start. “It’s one of several complex conditions where there are lots of new treatment options,” he continues. “Nobody really knows how patients with intractable migraines are engaging with pharma. Nobody knows what kind of resources or support those patients are seeking.”