Facebook's recent push to promote organ donation in the United States caused registrations to soar; a similar social media initiative could soon be launched in Canada.

Ronnie Gavsie, CEO of the Ontario organ donor authority Trillium Gift of Life, said the U.S. Facebook donor drive has had a significant spillover effect on Canada. "I'm going to give some credit to Facebook; we did see a spike on that day

[May 1st]".

Gavsie added, "we also did see the results of the fantastic coverage Helene Campbell has received; we have greatly benefited from her effort to engage so many people through social media."

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Organ donor organizations like Ontario's Trillium Gift of Life have discovered that social media has energized potential donors. (Trillium Gift of Life Network)

At the beginning of May, Facebook gave users in the U.S. and U.K. the option to identify themselves as organ donors in their profile. Although there is no legal significance to the affirmation, the idea behind the plan was to spread awareness of the need for organ donors and to give people a way to inform others as to their wishes should there be a need to provide consent to doctors.

The Facebook drive had an immediate effect. In the first few days, more than 100,000 people changed their status to indicate they were willing to be donors.

Pitfalls of popular causes

The online drive to boost organ donations has also brought out profit-seekers.

Some make offers to sell their organs to the highest bidder. As many as 75 per cent of respondents to individual pages seeking assistance request payment for organs, according to Dr. Arthur Caplan, a professor of medical ethics at the University of Pennsylvania.

Desperate patients may spend thousands for an organ on the black market only to find that they've been swindled out of their money. There have also been scams aimed at those wanting to contribute money to support organ donation.

To be official, a willing organ donor needs to sign up with their own government's donor program, so Facebook also provided direct links to local donor registries. Donate Life America (DLA), a non-profit dedicated to raising donor awareness, subsequently reported an average 1,000-per-cent increase in online donor registrations across the U.S. over the six days following the addition of the donor feature.

To put that in concrete terms, during that time period 33,406 people legally registered to be donors; other years the number of signups was much smaller – in 2011 for the same time period, it was 3,288. Since then, the signup numbers have stabilized at around 1,150 per day, which was still more than double the historical daily average of 548.

The U.S. Facebook initiative has been labeled a success, but it's not clear when it will be offered to Canadians. Stacie Bumbacco, a senior consultant the company that represents Facebook in Canada, said that the company "will launch to additional countries [including Canada] in the coming weeks and months," but specific details were not available.

A new online cause

The use of social media can allow causes to reach people otherwise unaware of the scale of a problem. The president of the DLA, David Fleming, was in full support of Facebook's organ donor initiative, saying that it "is a simple way to provide hope for those in need."

Before the formal organ donation program was launched, Facebook had already become a direct link between donors and patients. Pages devoted to organ transplants have sprung up for particular organs, such as kidneys, hearts and other parts. Patients provide stories and medical details, creating a sense of urgency and familiarity to prospective donors.

There were stories about patients in hopeless situations making appeals to other Facebook users and finding a willing donor quickly. Earlier this year, Hannah Craig, a woman with a rare blood type put her request for a new kidney on the social networking site. Just a week later, a friend of her cousin volunteered and now both of them are recovering from the procedure.

"I just broke down crying -- a good cry because it was such a relief," Craig said. "It's an amazing gift to give someone, it's just wonderful. Thank you Mark Zuckerberg and Facebook for having that social network around to inspire transplants and stories."

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Mark Zuckerberg decided to add an option for users to self-identify as willing organ donors after talking with the late Steve Jobs. (Steven Senne/Associated Press)

The realization that Facebook could be used to propel social causes like organ donation even further was based on the analysis of user interest and activism in response to publicized disasters around the world, according to CEO Mark Zuckerberg in a press release about the project.

He added that simply identifying oneself as a willing participant in the drive allows users to spread awareness of the need for donors. Users jumped in and formed community pages to organize and help those affected in the 2011 tornado disaster in Joplin, MO, for example, as well as the Fukushima tsunami disaster in Japan.

Agencies are counting on the willingness of peers to register on Facebook as a method to encourage others to make that extra step to sign up for local donor registries.

Spillover into Canada

Across Canada, more than 4,500 people are on waiting lists for organs and tissue, according to Trillium's Gavsie. However, in many places donor registration rates have stagnated and some traditional (i.e. driver's licence renewals) sources of signups have been starting to dry up. Online registrations are seen as an optimal way to reach out to otherwise unavailable people who might join the program.

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Often even just one donor can provide organs to many other patients. (Fabrizio Bensch/Reuters)

"It's made a huge difference," said Gavsie. "We launched online donor registrations in April 2011, and that created a new world for us, a new platform; we saw the possibilities of tremendously creative new ways to reach people."

The viral nature of the Facebook awareness program made a big splash with some Canadian organ donation societies.

According to Gavsie, online registrations for organ donors on their site (beadonor.ca) spiked on the first day after the launch of the feature in the U.S. More than 360 people signed up; the number is normally around 100.

Jillian Barrott of Transplant Manitoba reported a similar jump of 340 on May 1st before it returned to an approximate daily average of 100. Other registries across the nation saw similar jumps, although it was more pronounced in metropolitan regions.

"It was likely due to the power of media coverage," said Gavsie, adding that Helene Campbell's case was also widely publicized at the time of the Facebook campaign launch. "The media has a tremendous effect that has on increasing public awareness and it was a tremendous benefit to us."

However, not all reporting registries noted a change. According to Nicole Brooks, communication officer at Nova Scotia's Department of Health and Wellness, outside of the effect of regular and consistent drives for registrations there was no significant change due to the Facebook initiative. 

A new national cooperation

Unlike in the United States, Canadian organ donor organizations have been traditionally separate, with no unifying body coordinating across provincial borders. This makes a huge difference from a promotional standpoint — Facebook was able to use the national agency in the U.S. to help get its message out.

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Helene Campbell, a double-lung transplant patient, has been a strong voice and attention grabber for the cause of donor registries all over North America. (The Canadian Press)

However, on June 20th, Canadian Blood Services (CBS) released details of a plan to assist in coordination between disparate provincial agencies. Once the series of recommendations are implemented, public and private avenues of social media outreach may be much more easily arranged, according to Sam D. Shemie, executive medical director of donation at CBS.

"I think public awareness is definitely part of our mandate going forward, but the specifics of what that means in terms of strategy is still not yet defined," said Shemie. "Canadians have told us 'look, make it easy for us to make a decision,' and that means the complexity of filling out a form and putting it in the mail makes it a bit difficult in this quick, point-and-click era."

"What we want to do is to develop a system that makes it easy for Canadians to indicate their wish to donate and that we use electronic applications and social media to do that," he added.

In the meantime, CBS' objective is to optimize the donor infrastructure in hospitals as well as make provincial registries available to agencies across provincial borders. These efficiencies have lead CBS to foresee a 50 per cent increase in transplants from the increase in collaboration.