A social media push boosted the number of people who
registered themselves as organ donors 21-fold in a single day, Johns Hopkins
researchers found, suggesting social media might be an effective tool to
address the stubborn organ shortage in the United States.
The gains were made in May 2012 when the social-networking
giant Facebook created a way for users to share their organ donor status with
friends and provided easy links to make their status official on state
department of motor vehicle websites. The findings are being published in the
American Journal of Transplantation.
"The short-term response was incredibly dramatic,
unlike anything we had ever seen before in campaigns to increase the organ
donation rate. And at the end of two weeks, the number of new organ donors was
still climbing at twice the normal rate," says study leader Andrew M.
Cameron, M.D., Ph.D., an associate professor of surgery at the Johns Hopkins
University School of Medicine. "If we can harness that excitement in the
long term, then we can really start to move the needle on the big picture. The
need for donor organs vastly outpaces the available supply and this could be a
way to change that equation."
Struggle to get
Over the last 20 years, despite many efforts, the number of
donors has remained relatively static, while the number of people waiting for
transplants has increased 10-fold. There are more than 118 000 people currently
on waiting lists in the United States for kidneys, livers and other organs and
thousands of these patients will die before they receive transplants. It's
estimated that between 5,000 and 10,000 people die every year whose organs
would be suitable for transplant, but because they had not consented to be
donors, their organs go unused. In the United States, organs may not be removed
from a deceased donor without permission from either the individual prior to
death or the family at the time of a relative's death. It is believed that over
time, roughly 100 million Americans have registered to donate.
By looking at data from Facebook and online motor vehicle
registration websites, the researchers found that on May 1, 2012, the day the
initiative began, 57 451 Facebook users updated their profiles to share their
organ donor status.
There were 13 012 new online donor registrations on the
first day, representing a 21.2-fold increase over the average daily
registration rate of 616 nationwide. Registrations varied by state, with the
first-day effect in Michigan rising nearly seven-fold and with nearly 109 times
as many online registrations in Georgia as on a typical day. Cameron says it
was heartening to see that the states of New York and Texas, where organ
donation rates are among the lowest, had some of the biggest bumps on that
While the number of online registrations dropped over the
following 12 days, Cameron says it was still twice the normal rate at the end
of that study period. "The half-life of a movement online is often just
hours," he says. "This had a very powerful, lasting effect. But we
need to find a way to keep the conversation going."
While the number of declared organ donors increased, it
could be decades before researchers determine whether those people ultimately
donate their organs.
How it started
The Facebook organ donor project came about after Cameron, a
transplant surgeon, and his Harvard University classmate — and current Facebook
chief operating officer — Sheryl Sandberg began talking about the organ
shortage at their 20th college reunion in 2011. Through many conversations, the
idea of having a place in the Facebook timeline for users to share organ donor
status was born.
Going forward, Cameron says the key to continuing the push
for more organ donors is figuring out a way to bring back some of the lost
attention of those early days of the campaign and to find a way to get it to
again go viral. Cameron says he has spoken to Facebook officials who are
discussing re-launching it on its mobile platform, changing its prominence on
the Web version or even offering incentives, such as coupons, for people who
declare they are organ donors.
Cameron says that in recent years social media has shown it
is not only a place for sharing what you ate for lunch or posting cute pictures
of your kids. It can be an agent of social change, such as its use during the
Arab Spring, after natural disasters such as the recent Oklahoma tornado, and
in get-out-the-vote efforts before the recent election, he says.
"This was the first effort like this designed to mobilise
people for a public health cause," he says. "Now we want to build on
that. Studying the response to the organ donor effort is the next step in the
process of using social media for social good."