A WEGO Health study published in 2017 found that 87 percent of patients will ask their physician about a medication if they learned about it from a trusted patient influencer. The study revealed that patient influencers—recognized leaders on social media—are playing a critical role in the choices patients make in relation to their own health journey.

But how do patient influencers feel about social media in a time when privacy concerns are top of mind among most U.S. patients and consumers?

In an effort to better understand the patient influencer community, WEGO Health recently surveyed 412 patient influencers across dozens of chronic, complex and rare health conditions in the U.S. Among the most notable findings, according to WEGO Health, is that the majority of influencers continue to turn to Facebook on a daily basis, despite concerns over the company’s business practices. The vast majority say their motivation is to connect with their peers in patient communities – both publicly and privately.

“In addition, we found that nearly half of those on Facebook have modified their
privacy settings or now use the platform less than in the past,” WEGO Health noted in a report on the survey’s findings. “They are also more discerning when it comes to choosing how they share certain types of information on Facebook, electing to use private groups or direct messaging more frequently.”

The firm also noted that its findings suggest that life sciences companies face a unique challenge when looking to engage with patients online. “A key takeaway is the need to work through social media channels outside their own,” the WEGO Health report noted. “As we learned in 2017 with our Behavioral Intent Study, their best hope, at least for now, may be in working in close collaboration with patient influencers – the leaders in patient communities who have earned the trust of their peers, and have the followers to prove it.”

Among the survey’s key findings and indications that patient influencers continue to rely on social media to make health decisions are the following:

  • Nine out of 10 patient influencers say that online communities play an important role in their health decisions
  • Nearly half say online communities play a “very” or “extremely important” role
  • 87 percent say social media is critical to the future of the patient communities
  • And 88 percent of patient influencers have shared a medication experience on social media; nearly seven in 10 have shared both a positive and negative experience