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What Mark Zuckerberg’s Manifesto Means for Facebook’s Patient Communities

When it comes to bold pronouncements about Facebook’s future, ears in the patient community tend to perk up fast. And with good reason.

Our most recent survey of patient leaders, conducted in February, indicates that more than 80% turn to social media for peer support. More than 73% say they use social media to stay on top of health-related topics, and nearly nine in ten consider social media critical for the patient peer community.

Facebook is their go-to source. No other social media platform even comes close.

In fact, despite growing concerns over privacy and mounting frustration with the company’s troublesome business practices, 90% of patient leaders say they still use Facebook every day. By contrast, Instagram is a distant second, with 64% using it daily.

So when Mark Zuckerberg, Facebook’s CEO, posted his 3,500-word privacy manifesto last week, many of us were left wondering – what will this mean for Facebook’s patient communities?

While some industry observers called Zuck’s vision for the future a “game-changer,” others questioned whether it will prove to be a “game-ender.” Axios reporters Sara Fischer and Scott Rosenberg put it bluntly: “It will either cement the social network’s global dominance or end it.”

If only it were that simple.

Given that virtually every patient leader we work with checks Facebook nearly as often as they open their refrigerator, we’ve been eager to wrap our heads around Zuck’s news. The implications aren’t entirely clear. Not to us, not to industry analysts, and arguably, not even to Zuck himself.

That said, here are four key takeaways we’ve gleaned so far:

  1. Zuckerberg’s vision is to effectively split Facebook in two. His analogies are a “town square” where people can talk to many people at once. This is the classic news feed model, along with groups, Instagram posts and Stories. The other is the “living room,” which is all about private communications using messaging apps with end to end encryption. Essentially WhatsApp, Messenger and Instagram Direct – all neatly bundled together. This is Zuckerberg’s pivot to a “privacy-focused vision for social networking.”
  2. By all accounts, this pivot is expected to take years to execute. In other words, the impact will not be obvious for a very long time. And that’s only if Facebook delivers on Zuck’s vision. If it doesn’t, it won’t be the first time. If it does, it will fundamentally change how Facebook collects the user information on which its behemoth advertising business exists. (Facebook made $56B in 2018, mostly from advertising.)  As M.G. Seigler, a general partner at Google Ventures said: “This is a tectonic shift. Either advertising has to be reimagined again, or it has to be weaned off of.” As we know, Facebook’s current model is based upon collecting lots of data and then building targeted ads. This will be much harder with disappearing data and end-to-end encryption.
  3. While Zuck’s post talks a lot about the need to respect privacy and embrace encryption, it does not say there won’t also be data collection and targeted advertising. As WIRED points out, there’s plenty of that on other messaging apps, and there could be plenty on the integrated messaging platform Zuck has in mind. Only time will tell.
  4. Indications are that the Facebook News Feed, the core of its business model, will morph into something very different…eventually. Some expect it will be replaced by a new kind of commerce engine, but Zuck’s post offered little insight into what that might be. He did drop a few hints, suggesting it will evolve into “businesses, payments, commerce, and ultimately a platform for many other kinds of private services.” What that will eventually look like is anybody’s guess.

So what does Zuck’s manifesto mean for the patient communities who turn to Facebook every day for support? Truthfully, no one can say for sure. But given the length of time this pivot is expected to take, we are unlikely to notice any real effects until well into the foreseeable future.

In the meantime, ads will continue to appear in the news feed. User data will continue to be captured and shared. And Zuckerberg can now tell the world that he “gets it.” He knows that Facebook’s business model must change.

But to be clear, this isn’t only about privacy. It’s also about the dramatic shift in how people are engaging with social media. As reporter Molly Wood pointed out in WIRED, Facebook’s News Feed is a firehose that millions of people simply want to shut off. As Zuck wrote in his essay:

“Today we already see that private messaging, ephemeral stories, and small groups are by far the fastest growing areas of online communication. There are a number of reasons for this. Many people prefer the intimacy of communicating one-on-one or with just a few friends. People are more cautious of having a permanent record of what they’ve shared. And we all expect to be able to do things like payments privately and securely.”

This suggests that Zuck is responding not just to threats from regulators and privacy advocates. He’s also responding to the shifting winds in the marketplace.

Industry-watchers seem to agree that Zuckerberg is going to do everything he can to cement Facebook’s dominance, not end it. And he’s going to do it through messaging. Patient leaders won’t mind. Our recent survey revealed that 69% currently use Facebook messaging to share health-related information – roughly the same percentage that use email for that purpose.

From a privacy standpoint, there’s reason to be hopeful here. Data sharing without consent is going to be more difficult. Privacy settings are going to be more robust. End to end encryption will reduce risk for patients, particularly those concerned about sharing sensitive health information, and for advertisers who face growing pressure not to exploit personal data without a users’ express permission.

As important, the shift from town hall to living room plays to the strengths of close-knit patient communities, where members place a premium on trust and authenticity. Lots of sharing happens today through Facebook groups and private messaging. The value of Facebook’s platform for peer support is likely to remain, but manifested in more intimate and less intrusive ways.


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