The recent legal battle over allowing 10-year-old Sarah Murnaghan, who is dying of end-stage cystic fibrosis, to be included on the adult lung transplant list sheds light on the heartbreaking need for organ donors to meet the demand of the 75,660 patients currently on the transplant list in the U.S.
Last May, Facebook announced that users could post their organ donor status to their Facebook Timelines. To see whether this strategy was effective in boosting donor rates, researchers from Johns Hopkins University School of Medicine in Baltimore analyzed online donor registration activity in state registries during the initial weeks following the start of Facebook’s project.
The researchers found that during the weeks after the initiative launched, there was a significant uptick in donor registration in all states. On the first day of the launch, there were 13,054 new online registrations — a 20-fold spike from the prior average of 616. Notably, six times as many people registered on the first day of the Facebook feature in Michigan, and there was a 108-fold increase in Georgia.
The rates remained high for over a week after the Facebook project started, but as time went on, the numbers began to drop.
“Our research speaks to ongoing efforts to address the organ availability crisis in the United States. It also suggests that social media and social networks may be valuable tools in re-approaching refractory public health problems,” said Dr. Andrew Cameron of Johns Hopkins in a statement about the study. “However, the bump we saw did diminish over weeks, implying that more work is needed to assure sustainability or ‘virality’ in this case.”
The study authors concluded that the Facebook initiative is another example of the growing use of social media in public health campaigns like suicide prevention and child obesity programs. By studying the spread of organ donation registration through billions of Facebook users, researchers can gain a better understanding of how medical-related behaviors and decisions spread between connected groups. “This knowledge will be helpful as we design future interventions to improve the low, static organ donation rates that continue to complicate the organ availability crisis in transplantation or reapproach other refractory public health problems via social media and social networks,” the authors wrote.
To add organ donor status to Facebook Timeline, create a new “Life Event,” then click “Health & Wellness” and select “Organ Donor.” Users then have the opportunity to add in more details, like when and where they became a donor and any additional anecdotes. Although you cannot officially register to be a donor over Facebook, users are provided with appropriate donor links.
When a user changes their status to “donor,” a message is then sent to their friends to alert them of the status change. Their friends then have the option to also change their status and the message change continues. The hope is that more people will be motivated to become a donor if their friends are, and a steady increase in donor numbers will mean greater hope for those on the transplant list.
The study is published in the American Journal of Transplantation.