Facebook Organ Donation Scheme Fizzles

Healthcare Social Media: Time To Get On Board

As many as 100,000 Facebook users worldwide signed up to be organ donors last May when the social network added a feature that allowed people to link to organ donation registries. But the number of new donors generated by the Facebook announcement trailed off rapidly, according to a recent commentary in the Bioethics Forum, the blog of the Hastings Center Report.

Written by Blair L. Sadler and Alfred M. Sadler, Jr., MD, founding fellows of the Hastings Center, a bioethics research organization, the article notes that 6,000 people enrolled in 22 state donor registries on May 1, when the Facebook initiative was announced. On a normal day, those registries would have signed up 400 new donors.

But in the weeks and months that followed, the Facebook effect rapidly trailed off. According to data from Donate Life California, the numbers of new donors enrolling in the top four state registries--those of California, Florida, Illinois, and Ohio--returned to pre-announcement levels within a week.

As a result, Blair Sadler told InformationWeek Healthcare, Facebook has really not "moved the needle" on organ donation, at least in the U.S. Nevertheless, he said, he and his brother see "the extraordinary opportunity" in social media.

"The need is enormous and it's easily understood," he observed. "The benefit is also enormous and easily understood in terms of the stories of people whose lives have been saved through organ donation."

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About 6,000 Americans die each year while waiting for organs that might have helped them survive.

The Sadlers, who helped draft the Uniform Anatomical Gift Act that was adopted by all 50 states in the early 1970s, suggested that what has been missing from the Facebook initiative is "repeated cuing that can help drive individual action." While much of that prompting is now done through state departments of motor vehicles, the Sadlers pointed out that interactions with the DMV occur infrequently for most young people, whereas Facebook interactions occur multiple times every day.

To continually remind people of the need and opportunity to become organ donors, the authors suggest the following:

--State donor organizations regularly provide Facebook with numbers of registered donors. --State registry sites add social sharing features so new organ donors can share this information via Facebook, Twitter, and other social media. --Social media sites allow donor registries to advertise for free. --Social media share success stories about lives that have been saved as a result of timely organ donation.

Facebook still allows users to link to donor registries. But users must go through four screens to do so, starting with his or her profile page. Alfred Sadler suggested in an interview that it might be easier to prompt users to become donors if the link to registries was on Facebook's home page.

"This is a great new way to get the word out," he said. "What they haven't figured out yet is how to keep the interest ticking along."

Facebook's initiative "came as this glimmer or flash--an example of what's possible," said Blair Sadler, now a senior fellow at the Institute for Healthcare Improvement. "It needs a set of strategies to create this cuing, or reminding, or introducing people to the opportunity and encouraging them to participate."

In coming months, he added, he and his brother will be working with other interested parties, including Donate Life California, to develop new methods of employing social media to increase organ donation.

Susan Giurleo, Ph.D., a psychologist, consultant, and social media expert, told InformationWeek Healthcare that the decline in uptake on Facebook's organ donor feature reflects a basic marketing principle. "If people don't see it or aren't reminded about it over and over again, they forget it exists. Nothing can just 'sit' on Facebook and make an impact. People are bombarded by new updates and stimuli every minute they are on Facebook. The things that get noticed are those that are pushed out there repeatedly."

[ Editor's Note: InformationWeek Healthcare contacted Facebook before this article's publication, but did not receive a comment by press time. The leader of Facebook's organ donation effort, Sarah Feinberg, later sent this comment: "The data and information used in the Hastings Center report is not up to date. Facebook is thrilled that more than 275,000 Facebook users in several countries, over the course of just 4 months, have used the organ donation tool and shared with their friends and family that they are organ donors." ]

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