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In the News: Online Health Communities After Cambridge Analytica

Before the Cambridge Analytica scandal, Facebook seemed to be on an endlessly upward trajectory. One of the platform’s biggest strengths had become group functionality. Over 100 million people are members of groups on the social media platform. These groups have grown to be especially meaningful for patients. Following news of the major data breach, Facebook saw some financial consequences and there was a feared mass exodus from the platform. While Facebook’s overall growth has slowed down, these fears appear to have been overblown. But have those fears come to fruition within Facebook-based online health communities after Cambridge Analytica? A recent profile by MM&M – Medical Marketing and Media sought to find out.

Not much has changed

Relying largely on feedback from patient influencers who are part of the WEGO Health network, MM&M found that for many of Facebook’s health groups, there hasn’t been much change. One reason why? Right now, there isn’t a suitable alternative. Melissa Adams VanHouten, a gastroparesis advocate who runs a private Facebook group with over 21,000 members, describes Facebook as essentially irreplaceable. “Nothing functions quite like Facebook groups,“ VanHouten says. “I have found no other community site that equals the flexibility and options Facebook offers.”

Right now, Facebook offers something vitally important for patient communities that many patient leaders say they can’t get elsewhere. “The use of Facebook to bring awareness and support to those who need a voice can’t be understated,” says hyperhidrosis patient influencer Maria Thomas.

While many leading patient voices like VanHouten describe their Facebook experiences as being just as vibrant and active as before, others say they have seen a big change. A BRCA group that had previously been a public group chose to become a private group. Member Casey Quinlan describes the group now as a “ghost town.” She also describes Facebook’s data practices as “creepy” and says that she would never start a group on the platform today.

Perhaps tying the good and the bad together, lupus patient influencer MarlaJan Wexler celebrates the value Facebook offers while reminding that data privacy is concerning when using the internet, period. “If you put something on the internet, it’s not private,” she says, “no matter how private you think it is.” For Wexler, the value of sharing her story and supporting other patients is worth the risk. “You have to go in with your eyes open,” she concludes.

Stay tuned

So, has the landscape for online patient communities changed after Cambridge Analytica? In some cases, yes, and in some ways, it’s too soon to tell. But for most patients, the words our own Jack Barrette wrote back in March seem to be holding true: “For health communities, Facebook is too important to delete.”

Visit MM&M for the full story.

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