It helps to have friends in high places.
For about a year, Johns Hopkins surgeon Dr. Andrew Cameron had been thinking about trying to use Facebook to promote organ donation. More than 123,000 people are waiting for an organ transplant, according to the most recent data from the United Network for Organ Sharing.
“There just aren’t enough organ donors to go around,” Cameron said. “That’s not a medical problem. That’s a social problem.”
Cameron went to Harvard with Sheryl Sandberg, now chief operating officer of Facebook. When he saw her at a college reunion, he suggested using the social network to help solve the organ donation crisis.
Sandberg, who had written a paper on the organ donation shortage while attending Harvard Business School, was all for it.
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On May 1, 2012, Facebook changed its platform to allow users to register as organ donors through the site. Users who signed up to be donors got a link to their state’s organ donation registry, and all of their Facebook friends were notified through the site’s newsfeed.
Almost immediately, the number of organ donors went up “22 fold,” Cameron said.
“We were able to track the data from all of the state registries for two weeks,” Cameron said. “And it went up in every single state.”
More than 1 million people have signed up to be organ donors through Facebook, he said.
“That’s proof that we can move the needle,” Cameron said.
What’s the best way to do that? That’s the question that weighs on the minds of many organ donation advocates.
Dr. David Mulligan, chief of transplantation and immunology at Yale University and chairman of liver and intestinal transplant committee for UNOS, said the number of organ donors has been stagnant in recent years.
He said several decades ago, organ procurement organizations received many organs from trauma victims, such as teenagers in car accidents. Stricter highway laws have cut down on those deaths, which is a good thing, Mulligan said.
But it also means there are more organs that come from older donors, which tend to be of lower quality.
“The group of donors is not the same as it was 20 years ago,” Mulligan said.
Libby Wolfe, executive director of Donate Life Maryland, works closely with the Maryland Motor Vehicle Administration to encourage people to sign up to be organ donors when they get their driver’s licenses renewed.
“That’s our main goal, to let people know about the importance of donation,” Wolfe said. “It is a very important decision to make.”
About 47 percent of Maryland residents are registered as organ donors, and about 99 percent of them sign up through the MVA, Wolfe said.
Cameron pointed to polls, however, that indicate more than 95 percent of people say they are in favor of organ donation. So why do only half of those people register as donors?
“So what is the difference?” he said. “It could be the (MVA) is not the place to ask such an intimate question.”
Or it could be that people don’t understand what’s involved in donation, or how great the need is, he said.
Buel Young, a spokesman for the MVA, said the agency coordinates events with Donate Life Maryland to kick off Organ Donor Awareness Month every April.
Residents have been able to sign up to be organ donors at the MVA since 1998. Since then, 2 million people have opted to be donors, Young said. Their driver’s licenses are marked with a heart icon.
Cameron stressed there is also a big opportunity with living donors.
About half of all donations come from living donors, but it can be difficult and awkward for people who need an organ to ask their friends and family for one, he said.
So Johns Hopkins researchers are developing an app for that.
The app—which will be tested on a pilot group of Johns Hopkins patients this summer—will allow those waiting for transplants to tell their story, what dialysis or other treatment is like for them and what the donation process entails. Cameron said the app could be available by the end of the year.
“It is the first of its kind for sure,” Cameron said.