Will Facebook’s organ donor success stick?
June 18th, 2013
01:41 PM ET

Will Facebook’s organ donor success stick?

It seems we often hear of another patient who has been desperately waiting for a transplant that could save his or her life.

Earlier this month it was a 10-year-old girl in Pennsylvania hoping for a new set of lungs. Before that it was Molly Pearce, who needs four organ transplants to survive. In September a man walked the streets of his South Carolina town asking strangers for a kidney for his wife.

More than 118,000 people in the United States are currently awaiting organ donations, according to OrganDonor.gov; 18 of them die each day without a donation.

Facebook co-founder Mark Zuckerberg is hoping to change that with the power of the world’s largest social networking site. On May 1, 2012, Facebook launched an initiative aimed at encouraging more people to register as organ donors.

Researchers at Johns Hopkins University, the Living Legacy Foundation and Donate Life America watched closely during the rollout, tracking how many people signed up and whether the initial boost in organ donor registration was sustained. The results of their analysis were published this week in the American Journal of Transplantation.

On the first day of the initiative, there were 13,012 new online donor registrations across the 44 states the study authors analyzed; that’s a 21.2-fold increase over the usual daily registration of 616. Over the next two weeks, the number of new donors each day declined, although levels still remained above normal. The total number of new registrations during the study period reached nearly 40,000.

Even though 40,000 is less than 0.1% of Facebook’s users, the study authors say the impact may have a ripple effect that could save lives. The theory is that sharing your organ donor status online will remind others to sign up, who will in turn encourage their friends to do the same.

“This ‘chronic vitality’ may give the Facebook organ donor initiative a chance of sustained impact that other previous media campaigns have lacked,” the authors write.

The real question is whether the elevated levels will stick. Was the initial boost really due to Facebook’s social media prowess? Or was it due to the media attention the site received in the days surrounding the initiative launch? And will the effort eventually result in more organ donations?

Only time will tell, the study authors say.

To join the social media campaign, visit your Facebook profile page and click “Life Event.” Doing so brings up a drop-down menu where you can select “Health & Wellness” and then “Organ Donor...” That will direct you to your state’s organ donation registry and allow you to post a story to your timeline about when and why you decided to become a donor.

New transplant technology keeps organs ‘alive’ outside the body

soundoff (27 Responses)
  1. Ethic's Board

    I am all for more donors, so more people can be offered organs.

    What I am not for is manipulating waitlists, developed by healthcare professionals who look out for the best interests of all patients on that list given the scarcity of the resource, because 1 set of parents and 1 set of congress people allow it. If those parents and congresspeople are cool telling the person who got bumped in person that they fixed it so their daughter got an organ but another person didn't, well by all means...

    June 18, 2013 at 15:48 | Report abuse | Reply
    • Adam

      Just to clarify, that little girl wasn't given preferential treatment beyond being put on the adult list. No one was really "bumped" per se.... no more so than if an adult was added to the list because they also need a donation. The injunction moved her from the pediatric list (under 12) to the adult list (over 12). Once there, her "score" was calculated just like anyone else on the list and her place on the list was determined based on merit, just like with anyone else. She didn't bump anyone who wouldn't have been bumped if an adult (with the same score as her) was added to the recipient list.

      However, I do agree with you that the federal government bending to the whim of the parents, just because they happened to get some media attention, is absolutely ridiculous. A board of transplant surgeons made these regulations, and then updated them in 2005 (less than 10 years ago); it is not the government's place to make rulings in medicine, especially when those making the decisions have no qualification in the medical field.

      June 19, 2013 at 09:55 | Report abuse |
  2. Adam

    What the government should do is make organ donation an "opt-out" policy. Make it so that everybody is automatically registered as an organ donor and if they genuinely don't want to be (for whatever reason), then they can opt out. From my experience, sheer laziness is the biggest reason why people don't sign up as organ donors. The majority of people seem to have the mentality that if they die, they have no need for the organs anyway, but they don't want to take the time to register. If everyone is automatically classified as an organ donor, then those with apathy towards it will benefit society without having to put in any of their time and effort and those who feel strongly enough against it, will just have to fill out a form.

    June 19, 2013 at 09:59 | Report abuse | Reply
  3. DTWilson

    How did all these people just do DECIDE to put in the effort to sign up. Was it simply a status or was there some sort of bridge involved to make the process easier. I just don't see hundreds of thousands of people doing if it took too many clicks.

    June 19, 2013 at 12:39 | Report abuse | Reply
  4. What's

    What's Facebook?

    June 19, 2013 at 15:25 | Report abuse | Reply
  5. davisxa

    Molly Pearce passed away on June 8th still waiting for organs.

    June 19, 2013 at 18:58 | Report abuse | Reply
  6. Jennifer Hill

    Great story!

    June 19, 2013 at 19:04 | Report abuse | Reply
  7. Wayne B

    It’s amazing to see results like this coming from Facebook. I’ve been unfortunate enough to have a family member on the wrong side of a waiting list. It’s a thing I wouldn’t wish on anyone. And I'm terribly sorry to hear about Molly, I wish her family the best.

    June 19, 2013 at 19:06 | Report abuse | Reply
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    June 19, 2013 at 21:30 | Report abuse | Reply
  9. NathR

    Anytime you see people taking the initiative to help others, it's excellent news (I wish I saw more like it).

    Unfortunately, continuous growth not likely sustainable when social media is involved in the process. It's a losing battle though, organ donation, waiting lists, etc. Why is no one speaking about organ regeneration yet?

    June 20, 2013 at 14:44 | Report abuse | Reply
  10. Roger McNeil

    Unfortunately growth like that is not sustainable when social media, and Facebook specifically are involved. I’m still far more curious to see where organ regeneration might lead.

    June 21, 2013 at 02:05 | Report abuse | Reply
  11. NathR

    Glad someone else is on the same page, Roger.

    June 21, 2013 at 20:14 | Report abuse | Reply
  12. Ron James

    Found an interesting article on Wired that really gives a nice breakdown on the relationship between stem cells and organ regeneration into perspective: http://bit.ly/11nKfVF

    Like this article, it paints a great portrait of the promise of organ regeneration.

    June 21, 2013 at 20:16 | Report abuse | Reply
  13. Rick

    Thanks for sharing Ron. I certainly hope this era comes sooner than later.

    June 25, 2013 at 01:56 | Report abuse | Reply
  14. NathR

    As do I. The day we can close that gap is the day we can save millions of lives and not have to put millions through the torment of those waiting lists.

    June 25, 2013 at 02:51 | Report abuse | Reply
  15. John Reilly

    Incredibly interesting and relevant. @Ron, I've also found that Kevin Xu's columns offer a great amount of insight into the state of the stem cell industry. His weekly posts are very worth keeping an eye on.

    June 27, 2013 at 21:51 | Report abuse | Reply
  16. NathR

    Have to echo the sentiment. Great find Ron. Thank you for helping spread a highly informative post.

    July 3, 2013 at 16:50 | Report abuse | Reply
  17. Thomas P.

    Isn't MEBO International the company that has claimed to have the patent on organ regeneration?

    July 3, 2013 at 20:05 | Report abuse | Reply
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