The following article was written by Brian S. McGowan, PhD, a research scientist who has worked as a medical educator, mentor, accredited provider and commercial supporter. McGowan is author of the forthcoming fall 2012 release of #SOCIALQI: Simple Solutions for Improving Your Healthcare. Connect with Brian on Twitter: @BrianSMcGowan
The need for organ donation has been widely publicized in the United States for decades. Thousands of cars are emblazoned with "Donate Life" bumper stickers, and many states' driver's licenses announce a driver's organ donor status. Comedian George Lopez garnered headlines a few years ago when his then-wife donated one of her kidneys to him; for the past year, Dick Cheney's wait on the heart transplant list has served as a perpetual reminder of the need for more donors. Because of the life-or-death stakes and the reality that everyone is at risk, organ donation is one of the most understood health-related causes in the country.
On May 2nd, the cause got an unexpected publicity boost from Facebook. Facebook began allowing users to post their donor status on their profiles, and each status update carries with it a link to a registry where others can register as a donor. Facebook leadership has publicly stated that they expect the campaign could both raise awareness, and the number of donors, in one fell swoop.
Deconstructing the Real Need (and Danger) of the Facebook Campaign
According to Donate Life America, over 100,000 people in the U.S. currently need life-saving organ transplants (http://donatelife.net/understanding-donation/statistics/). Their need is often urgent, as an average of 18 Americans die each day awaiting transplant. As troubling as this is, there is promise in the fact that 98% of adults are aware of the need for organ donation, and 90% support the cause. Where's the disconnect? It turns out that "support" and "action" are two very different levels of engagement. In what can only be described as a truly startling statistic, while 90% of Americans support organ donations, only 30% understand the actions that need to be taken to become a donor.
It's a safe bet that in the coming days and weeks, we'll begin to hear heartwrenching stories about the series of events that led people to register as organ donors in the hours before their deaths. These stories will be emotionally engaging because of the bittersweet reality that organ donation is so often accompanied by the tragic loss of the donor. These accounts will serve to amplify the buzz surrounding the campaign and, between its announcement on Good Morning America, the unfolding stories, and the very real social influence of seeing new "I'm an Organ Donor" status updates filling our news feeds, there can be little doubt that the buzz will become deafening.
The Facebook campaign may have unintentionally created another distraction - if "support" (90%) and "action" (30%) are so clearly disparate, where will "I'm an Organ Donor" status updates fit into the mix? Is Facebook's campaign more likely to drive status updates or donor registrations? What will the conversion rate be between A and B? Perhaps more cynically, is a Facebook donor drive an appropriate way to motivate donors?
The Gray Zone at the Intersection of Social Media and Health Advocacy
Healthcare activists have always made their case by generating awareness and leveraging motivation. Activists spend their time and energy going door-to-door, creating public service announcements, or developing ribbon, bracelet, or red dress campaigns; these efforts work because they serve as triggers that move their intended audience to think about making a contribution to support the cause. But social media outlets, particularly the ubiquitous channels like Facebook, can lower the cost and effort of sharing.
Social media platforms create avenues for frictionless dialogue, with and amongst the target audience, and messages can take on lives of their own. Activist buttons and ribbons can be easily displayed on supporters' walls, and the message can quickly become viral. This sounds impressive because human behavior studies suggest that people need some form of immersion to move through stages of pre-contemplation, contemplation, and readiness for action. Each stage requires additional input for processing. Suffice it to say that leveraging social media outlets for communication, information, and engagement fundamentally alters how successfully health activists can drive these changes of mind.
But when does social media immersion become a form of over-hyped and disingenuous propaganda? Consider for a moment that we have no way of correlating "I'm an Organ Donor" updates with whether or not a registration was ever completed. How do you know that friends bearing pink ribbons on their avatars have actively supported breast cancer? How many people will register because they believe that friends and family did, simply because it was suddenly in vogue to click the "I'm an Organ Donor" button? When does "frictionless" run the risk of meaning "without thinking?"
One Additional Concern
While Facebook's campaign may appear to be successful in changing users' minds about organ donation, it may be just as effective in changing cultural norms as they relate to sharing personal health information online.
There's a real difference between proudly displaying your donor status on your driver's license and publicly sharing your organ donor status on your Facebook profile. While the former supports the process of donation, the latter must be done with some reservation. To be clear, publicly declaring your organ donor status isn't a high-risk privacy issue - those millions of bumper stickers prove this. My concern lies in the fact that this declaration can serve as a gateway to riskier health information-sharing behaviors. If users fail to think through how their information could be used or manipulated, they may find themselves facing some unexpected consequences.
Caveat Scriptor...Let the Author Beware!
I myself am a "card-carrying" advocate of community-building in healthcare - I believe that social capital may be our best chance to fix what ails the American healthcare system. I'm also an advocate of organ donation; I spent several years on the Heart Transplant Team at Temple University Hospital. Despite this, I strongly recommend that Facebook users exercise discretion when engaging in health-related discussions and revelations via social media. Your health information is protected for a reason: it can easily be used against you.
Please go ahead and register to be an organ donor, but don't run off and update your Timeline just yet.
Brian S. McGowan, PhD, is a research scientist who has worked as a medical educator, mentor, accredited provider and commercial supporter. McGowan is author of the forthcoming fall 2012 release of #SOCIALQI: Simple Solutions for Improving Your Healthcare. Connect with Brian on Twitter: @BrianSMcGowan