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Organ Donor? Tell All Your Friends on Facebook

By Ankita Rao, Kaiser Health News


Toni Lewis-Bennett remembers hesitating when she was asked to be an organ donor while applying for her driver's license.

But years later, when a friend at work became sick, she got tested to see if she could donate her kidney to save his life. And with a green light from doctors, there was no question in her mind that she would go through with the transplant.

"I felt honored to be able to do it," Lewis-Bennett said. "I don't think many people in their lives get the opportunity to make a significant change in someone else's."

She said not enough people are part of the organ donor dialogue, which doesn't always come up in normal conversation. But a social  media campaign might be changing that culture.

In May 2012, Facebook introduced an option that lets users add "Organ Donor" to their profiles, just as someone would add their favorite movies or marital status. It also provided users a quick link to sign up for the national registry of organ, eye and tissue donors through Donate Life. The Facebook project was a partnership with a team from the Johns Hopkins Medical Center, the Living Legacy Foundation of Baltimore and Donate Life America.

The results, as chronicled in a report released on Tuesday, were immediate. On the first day alone, more than 57,000 people added the label to their profiles, and 13,054 people registered to be donors online. A year later, 30,818 people had registered to be donors, about five times more than pre-Facebook rates.

For the authors of the report, published in The American Journal of Transplantation, the surge in awareness was one step toward resolving the chronic shortage of organs available for transplants.

"Eighteen people die every day waiting for an organ," said Dr. Andrew Cameron, the Hopkins surgeon who helped spur the Facebook effort and the lead author of the report. "But it's not a medical crisis, it's a social crisis."

Cameron said his team's collaboration with Facebook was meant to address a disconnect between donors and recipients.

In a 2005 Gallup poll, for example, 95 percent of respondents said they support organ donation. But that doesn't always translate to action: in 2009 there were about 14,600 donors for a waitlist of 105,567 people needing organs, according to federal report on organ and tissue transplants.

With social media like Facebook and Twitter, Cameron said, the steps to consider donations, and register, become a little more accessible.

Karan Chabbra, a medical student and health care blogger, said he chose to display the Organ Donor option on his profile the first day he saw it on Facebook.

Although he had earlier registered as an organ donor when he received his driver's license, the 23-year-old said including the decision in a profile was as much a part of an online identity as education or language skills. He also said noting the decision to be a donor can have broad effect on a serious public health problem.

"I think with this, and other similar issues, this can be a social tipping point," he said. "If I can show that I'm doing it, it could subtly encourage others."

And it's Chabbra's generation that could make the largest impact. According to the results, those who displayed their organ donor status were largely 25- to 35-years-old and included more women than men. The highest response was in the state of New York.

Cameron said he and his team are hoping to study and apply the results to make the campaign more effective.

"It's frustrating when we see patients dying who we know we can help," he said. "We have to rededicate ourselves and see how we can change that."


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