Skip to main content

In a recent Forbes article, genetic counselor Ellen Matloff highlighted concerns surrounding sharing one’s health information on social media, even in groups that are ostensibly private. On Facebook, a company that last year made $39.94 billion in ad revenue alone, patients have made (and are encouraged to make) closed groups focused on their specific conditions.

Profiting off peer support

Within these Facebook groups, patient find an empowering support network of similarly affected peers, sharing their experiences and offering solidarity to the newly diagnosed, who enter these groups anxious about the health challenges set before them. These communities can be tremendously reassuring, and allow for a deep and lasting connection among people who might not otherwise have found one another without the Internet.

They are also deeply personal. In the article, Matloff describes one group, BRCA Sisterhood, which was comprised of members with potentially life-threatening mutations to the tumor-suppressant genes BRCA1 and BRCA2. Members “showed each other their breast reconstructions and prepared each other about what to expect.” Besides offering extremely sensitive health information, the members of this group have shared inconceivably intimate and painful experiences in a way that leaves them vulnerable, and they did so under the assumption that to be in a ‘private’ Facebook group means a reasonable expectation of privacy. But this wasn’t the case.

Too often in the current business models in health and tech, one person’s vulnerability is another person’s profit motive.

Thanks to a loophole in Facebook’s privacy policy (which has since been closed), marketers were able to peer into closed groups like BRCA Sisterhood and harvest the names within using a Chrome plugin designed expressly for this purpose. These marketers could then reap the benefits of the information gathered and deliver for their clients, create targeted advertisements, or even reach out to these patients directly for market research. Profoundly personal experiences shared in an environment of mutual trust and collective pain were thus commoditized, and not only did patients not share in that wealth, but they didn’t even know it was happening.

Is this the best we can hope for?

To know that we should not only fear, but expect that our most sensitive conditions be used as foundation for some multimillion-dollar marketing enterprise’s quarterly earnings? We don’t think so. Facebook can make promises about reaffirming their dedication to user privacy until they’ve run out of ways to say it, but at the end of the day they’re still beholden to their shareholders, not you.

Patient advocate and Savvy Community Manager Katy Fetters — who you might have seen in one of our recent SavvyChats — is familiar with the perils inherent in trusting Facebook with your data. She expressed a discontent all too common among its users: “If Facebook says the group is private then all Facebook users should feel secure in using the platform in these groups. Right? But no, not all users consider that the reason that this platform is ‘free’ is because we, the users, are its products. Commodification at its finest (or worst).”

Unlike Facebook, Savvy is a cooperative, not a corporation. We’re owned by our members, who have a voice in how we operate and share in the profits the co-op makes. We hope our example will inspire other companies to put people first, and challenge them to create sustainable business models that are not extractive, but benefit and protect their most valuable asset — their users. Care to join us?

Savvy Cooperative accelerates the development of patient-centered products and solutions by providing a gig economy marketplace for patient insights. Companies and innovators can connect directly with diverse patients and consumers to participate in market research, user-testing, discussion boards and co-design opportunities. Using a unique co-op model, Savvy Cooperative is the first patient-owned platform that empowers patients to use their health experiences to advance research, resources and product development. For more information about Savvy Cooperative, please visit and follow Savvy Coop on Facebook, Instagram and Twitter.

Jen Horonjeff
Post by Jen Horonjeff
August 20, 2018
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.