Private Facebook Group or Branded Online Community?

One of the most frequent questions we are asked when we help our healthcare clients develop online communities is “Why not use a private Facebook group?”

Given the fact that Facebook is “free” and the audience is huge, that’s a great question. Here are eight things you need to consider when choosing your community platform.

Branding and customization

Your organization has invested a lot in its brand online. Owning your own space (e.g. allows you to extend that brand to your community in a robust way and make the user experience your own. Your organization can control the experience from end-to-end.

Advertising (or lack thereof)

Similar to the previous point, some Facebook group owners have been dismayed to learn that Facebook can display advertising within their private group (and due to the nature of contextual advertising, this can easily be an ad for a competitor). Once again, owning your own community on your own domain gives you the final say over user experience.

Direct relationship

A branded online community allows you to connect with your members directly, with no risk of your relationship being taken hostage by Facebook in the future. Right now, you can send a message to other members of a private group – however there’s absolutely no guarantee that Facebook won’t change that in the future with no notice.

There would be ample precedent for such a change. To cite just one recent example:  The blow up regarding brand pages’ organic reach to their Facebook followers. These are companies that have invested a lot of time and money promoting their Facebook pages that are now finding out they don’t have the direct channel to their Facebook fans they thought they did.

Messaging designed for people, not pageviews

The CareHubs platform has a number of sophisticated features built specifically to support easy patient-to-patient communication, versus Facebook which has put little thought into their groups feature, and whose business model is built exclusively around driving pageviews.

A good example of this is our reply-by-email/post-by-email features. They make it super-easy for a patient to participate in the conversation and seek support even if they’re at a chemo appointment using a non-smartphone device. Facebook’s model is advertising driven so they require you to login to their site or use their custom app to participate in the conversation. Other examples of advanced features are daily digest options, subgroups, tagging, user surveys, hashtags, etc.

Robust privacy options

Facebook groups have a LOT of privacy problems.  See this CNET article and this Wall Street Journal one for a quick initial overview. Moreover, Facebook has arguably the worst privacy record of any company in the history of modern corporations.

The biggest immediately obvious problems with “private group” privacy are that (1) membership in the group is publicly listed on the group page, (2) the act of joining the group may be shown in the news feed, and (3) any member can add other members. In contrast, the CareHubs platform gives administrators precise granular control over access, and also allows for member pseudoanonymity (i.e. a member might choose to join a sleep apnea support group as “snoring-guy” instead of with their real name), which Facebook expressly forbids.


Trust is necessary to build valuable relationships, and given the above, it’s hardly a surprise that your members don’t trust Facebook. In fact, not only is Facebook the least trusted online company, polls show that Americans trust the IRS and NSA more than Facebook when it comes to protecting their privacy.

HIPAA compliance

All of the above items are true merely assuming an organization wants to create a peer-support style community environment. If your organization wants to use an online community platform for any clinical applications (or for any purpose where PHI may be involved) then HIPAA compliance, of course, becomes a major consideration.

At this time, there is no way to use Facebook for purposes that might include PHI. CareHubs, on the other hand, hosts many HIPAA-compliant communities, and can provide the organizational support required for clinical applications.


In October 2011, Facebook unilaterally removed the Discussions tab from Facebook pages and forced all page owners to just use the wall for conversations instead.

At its peak, the discussions app had more than 55 million monthly active users. Facebook offered no migration path or export option. All the historic conversations and threads were simply deleted.

A lot of people, including many health support groups, lost access to years of archival discussion with no recourse. It is entirely likely that groups could face the same fate in the future if they are no longer deemed to be of strategic value to Facebook’s advertising business.


In short, Facebook has demonstrated repeatedly and aggressively that they are not a trustworthy partner for healthcare brands. For that reason, we encourage our healthcare customers to use Facebook as a specific tool (distribution platform, authentication mechanism for easier signup and mapping user’s social graph) but not as the basis for their online community efforts.

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *