Facebook status boosts organ donor registration; how to update yours

Social media is extremely powerful, but can it help save lives? Photo: American Journal of Transplantation

WASHINGTON, June 24, 2013 — A study published last week in the American Journal of Transplantation showed that Facebook’s addition of an organ donor option in the “life events” section of a user’s timeline boosted organ donation registration by 21 times the average daily rate.

The study, conducted by researchers at Johns Hopkins University, gathered Facebook and online motor vehicle organ donation registration information from May 1, 2012, which was the day the Facebook campaign launched, to May 28, 2012. The researchers then compared the number of Facebook organ donor profile updates with organ registration data from 43 states and the District of Columbia. The study left out Alaska, Delaware, North Dakota, New Jersey, Pennsylvania, South Dakota and West Virginia because data was unavailable. 

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The results were surprising. On the first day that Facebook allowed the information to show up on profiles and timelines, close to 57,000 added the label to their profiles and 13,054 people registered to become an organ donor online. This represented 21.2 times the regular number of 616 people who register online in one day.

The effect of this first day ranged widely between states, with a 6.9-fold increase in Michigan and an amazing 108.9-fold increase in Georgia. 

“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 in a press release. “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.”

Currently there are over 118,000 people waiting for an organ donation in the U.S.  During the last 20 years, while the average numbers of organ donors has remained static, the number of people in need of a transplant has increased by tenfold. One organ donor can potentially save eight lives, but every day 18 people die waiting for a life-saving transplant. 

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Unfortunately, even though the Facebook trend continued, the numbers dropped over the following 12 days, but were still twice the normal rate at the end of the study. “The half-life of a movement online is often just hours,” says Dr. Cameron. “This had a very powerful, lasting effect. But we need to find a way to keep the conversation going.”

While it is true that it will take years to register an increase or decrease in actual organ donations from this social media effort, the results of the study show that social media can be used to effect some change.     

“We believe the organ crisis is a social crisis, not a medical crisis – and it is a crisis that can be solved,” said Sarah Feinberg, director of policy communications and head of the organ donation program at Facebook. “We are thrilled that more than 625,000 people have now shared on Facebook that they are an organ donor. We hope this trend continues, and that more and more people continue to share that they have made this life-saving choice.”

How to add “organ donor” to your Facebook timeline and how it works

Dr. Cameron came up with the idea after a class reunion with former roommate and current Facebook chief operating officer, Sheryl Sandberg. The Facebook donor project allows users to update their organ donor status as part of the “life events” section of their timelines. Once a user updates their status as an organ donor, Facebook provides a link where users can register with their state online.    

To update your profile and register online as an organ donor:

1.  Go to you Facebook user profile

2.  On your profile click on the “Update Info” button on the lower right of your cover photo, across from your name

3. On the bottom right of the “about” page that should open, click “Add a Life Event” under the “History by Year” heading

4.  Click on “Health and Wellness”

5.  Click on Organ Donor

For more help, click here.


READ MORE: A World in Our Backyard by Laura Sesana

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Laura Sesana

Laura Sesana is a writer and DC, Maryland attorney, joining the Communities in 2012.  She is the author of Colombia: Natural Parks, and has also written several articles on literary criticism.  She writes about food, health, nutrition, women’s legal issues, and the environment.  

In addition to writing for the Communities, Laura also works as an attorney and legal content writer.


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