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Study: Facebook's organ donor status increases number of registered donors substantially

Published: Thursday, July 2 2015 2:11 a.m. MDT

Last year, Facebook added a feature that allowed users to add "organ donor" to other profile information. Researchers say the new feature caused 13,054 new online registrations the first day. (Shutterstock) Last year, Facebook added a feature that allowed users to add "organ donor" to other profile information. Researchers say the new feature caused 13,054 new online registrations the first day. (Shutterstock)

Social media can be a catalyst for causes and organizations, but can it save lives?

On May 1, 2012, Facebook added a feature that allowed users to list "organ donor" on their profile pages. CEO Mark Zuckerberg explained in a statement that millions around the world are waiting for a life-saving heart, kidney or liver transplant, and medical experts believe that "broader awareness about organ donation could go a long way toward solving this crisis. (We) believe that by simply telling people that you're an organ donor, the power of sharing and connection can play an important role."

To see whether social media was an effective way to boost donor rates, researchers from Johns Hopkins University School of Medicine analyzed the donor registration activity in several state registries after the announcement was made.

The researchers found that on the first day of the new Facebook feature, more than 57,000 people added the label to their profiles and 13,054 people registered online to become an organ donor — a 21-fold spike from the previous average of 616 registrations. This first-day effect ranged from 6.9-fold in Michigan to 108.9-fold in Georgia. The trend continued to be elevated for 12 days before the numbers started 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. "However, the bump we saw did diminish over weeks, implying that more work is needed to assure sustainability or ‘virality’ in this case."

According to the U.S. Department of Health and Human Services, the number of people who have registered as organ donors has doubled since 1989, but the number of people who need organ donations has increased more than six-fold in the same amount of time.

Currently, 118,491 people are waiting for an organ. The scarcity of organs recently into the limelight when 10-year-old Sarah Murnaghan's family successfully sued to get her name to an adult lung waiting list. Previously, children under the age of 12 had to wait for pediatric lungs to become available, or wait at the end of the adult list, which included adults who aren't as critically ill. Her family said pediatric lungs were rarely donated, so they believe older children should have equal access to the adult donations.

In 2012 there were more than 1,700 lungs available, and all but 20 came from donors over 11 years old.

"If we can harness that excitement in the long term, then we can really start to move the needle on the big picture," Cameron said in a press release. "The need for donor organs vastly outpaces the available supply, and this could be a way to change that equation."

Seventy percent of Utahns are registered organ donors. Alex McDonald, director of public education for Intermountain Donor Services, noted that tissue donation, which can come from any circumstance of death, might not be lifesaving, but "it definitely changes lives."

"This is one thing where every person has the potential to make a difference," McDonald said.

email: crenouard@deseretnews.com

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