June 18, 2013 at 12:36 AM ET
The plight of a 10-year-old Pennsylvania girl who got a high-profile lung transplant last week underscored the scarcity of U.S. organ donations, but a new study of a “Facebook bump” in registrations shows that social media may be key to solving the problem.
More than 100,000 people in the U.S. took advantage of a Facebook change last year to allow certain members to identify themselves as organ donors -- including some 33,000 who signed up with their state registries to be donors for the first time.
On May 1, 2012, 13,012 people in 44 states signed up to donate organs, far higher than the 616 who sign up on a typical day, according to transplant experts at Johns Hopkins University, who collaborated with Donate Life America and the Living Legacy Foundation Baltimore.
That proves the value of social media in motivating an intractable U.S. pool of potential donors, people who overwhelmingly say they support the practice, but too often don’t get around to registering, said Dr. Andrew MacGregor Cameron, the paper’s lead author.
“To me, it was a promissory note on the power of social media,” said Cameron, surgical director of liver transplant at Johns Hopkins. “I think there is a lot of work left to be done to defeat the crisis of organ availability.”
Cameron and his colleagues tracked the results of the effort that allowed Facebook members using the site’s Timeline tool to declare themselves organ donors, which represented about 30 percent of Facebook users in the U.S. last May. The researchers studied profile changes, state donor registration patterns and Department of Motor Vehicles records from May 1, 2012 through May 28, 2012.
“Not only does organ donor declaration seem uniquely suited to social media dissemination,” they wrote, “but it is also an area where the outcomes (namely online donor registration) are immediately measurable.”
Those are important points in a country where attention was riveted for the past two weeks on Sarah Murnaghan, a dying Pennsylvania fourth-grader whose parents challenged the nation’s system for allocating scarce organs – and won. The child received a pair of donor lungs last week, days after a court order that forced officials to place her in line for adult lungs based on the severity of her illness rather than her age. She continued to recover Tuesday, her mother said in a Facebook posting.
“Overnight continued baby steps in the right direction,” Janet Murnaghan wrote.
A second child, Javier Acosta, 11, who, like Sarah, suffers from severe cystic fibrosis, was also elevated on the adult list after his mother filed a lawsuit. Experts with the Organ Procurement and Transplantation Network, or OPTN, last week agreed to make exceptions in the existing policy for certain critically ill children.
Sarah’s plight drew the nation’s gaze to a system where nearly 76,000 people are on the active waiting list for organ transplants and more than 118,000 are in need, yet only 45 percent of the adult U.S. population is signed up to donate, according to figures from Donate Life, an advocacy agency that tracks designations.
Boosting the number of organ donors has been a stubborn problem, with rates barely budging in recent years, even as the need for organs soared, Cameron said. Transplant experts have tried various education campaigns and awareness-building efforts, but the Facebook effort trumped them all, the researchers found.
Although the average jump was a 21-fold spike over the baseline of 616 new registrations per say, it varied widely, from a nearly 7-fold rise in Michigan to a nearly 109-fold rise in Georgia.
The power of Facebook’s 150 million U.S. users was evident, the researchers said, in the way donor declarations were shared by the sites “friends” dozens, hundreds, even thousands of times.
“This ‘chronic virality’ may give the Facebook organ donor initiative a chance of sustained impact that other previous media campaigns have lacked,” the authors wrote.
As of this week, the Facebook organ initiative has been extended to 17 countries and more than 600,000 people have changed their profiles, Cameron noted. No figures are available about how that translates into organ donation registrations.
“If each of those 600,000 people has, say, 100 friends, that’s 16 million online digital impacts for organ donation,” Cameron noted.
But even the force of a juggernaut like Facebook may be subject to fickle online attention spans, the study showed. On May 1, 57,451 Facebook users updated their profile, but that fell to 2,454 on May 14 and decreased to 316 on May 27.
And it’s even less clear how the effort will translate into actual donations. There has been no reported donation from someone who died after changing their Facebook profile, though advocates have been scouring the site for such a case, a spokeswoman for Donate Life America said.
It will be years before the impact of the new pool professed donors is felt in the organ allocation system, the researchers noted
Still, transplant and donation experts are holding out hope that Facebook and other social media platforms can achieve what past efforts have not: More organs to close the gap between supply and heartbreaking demand.
“Can we make it easy for people?” Cameron asked. “As easy as signing onto to your Facebook page to sign up for organ donation.”
To register as an organ donor in your state, visit the Donate Life America site.