DIABETES
July 3, 2013

Big Jump in Organ Donors on Facebook

Social networking turns out to be a good way to get people registering at state organ banks.

Facebook is good for many things — reconnecting with old friends, sharing envy-inducing vacation photos, spying on your ex. But who would have thought Facebook helps organ donation?

The number of people registering as organ donors rose significantly after a campaign on the social media site, according to a new study. Given that there are not enough registered organ donors in the U.S., Facebook's help is significant.

“There is a terrible crisis in the U.S.: more than 100,000 people are waiting for an organ transplant and 18 people die every day waiting for a transplant,” Andrew Cameron, corresponding author on the study, told TheDoctor.

When the change to the Facebook platform was made on May 1, 2012, organ donation rates online went up 21-fold.

Polls show that about 95 percent of people say they are in favor of organ donation and transplantation. However, if you go to the individual states’ departments of motor vehicles, only about 40 percent or 45 percent are signing up.

Low organ donation is really a social failure causing a medical crisis. There is some obstacle or barrier to efficiency in the organ donor registration system, says Cameron, an associate professor of surgery and surgical director of liver transplantation at the Johns Hopkins Hospital. People are dying who could be saved, if doctors and the medical community were doing a better job getting people to register as organ donors.

So, the researchers turned to social media to solve the problem. They collaborated with managers at Facebook who agreed to make a change in their timeline platform allowing users to specify that they are an organ donor as part of their profile, the same way they specify their marital status or where they went to school.

Users who specify they wish to be an organ donor are given a link to their state's official donor registry where they can sign up. In addition, all of their Facebook friends get a message that they have registered, and are invited to consider the issue and perhaps do the same.

Cameron says that when the change to the Facebook platform was made on May 1, 2012, organ donation rates online went up 21-fold in the U.S. with people using Facebook to register. “We followed the donation rates for the two weeks for which we had data, and we saw that even at the end of two weeks, donation rates were still double what they had been before the Facebook donor initiative.”

The Facebook app has been rolled out to 17 countries around the world, and the investigators hope that it will soon be available in every country, giving one billion Facebook users an easy way to register as organ donors.

“We have certainly thought about tapping into other social networks, such as Twitter,” says Cameron. He believes other types of social media, especially Twitter and YouTube, could be very effective in terms of increasing awareness of public health problems.

Connecting Kidney Transplant Patients with Living Donors

The investigators are currently working with Facebook to try and help those on organ waiting lists find someone in their social networks who may be an appropriate living donor.

Of the 100,000 people who are waiting organ donors in the U.S., 80,000 are waiting for kidneys. Half of all kidney transplants in the U.S. are done using a living donor.

Dr. Cameron points out that it can be very difficult for patients to think about how to ask someone to donate an organ, and they feel very uncomfortable doing it.

“We would like to help them using a Facebook app that we would develop with Facebook and some of our patients that would help people use their social network to identify someone.” The app would give patients and potential donors the information they need to make a decision. The goal, of course, is to see if the rates of living donation can be increased.

The study is published online in the American Journal of Transplantation.

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