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Facebook Boosts Organ Donor Registration

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dIgitalhealth

Social media site ‘Facebook’ boosted the number of people who registered themselves as organ donors 21-fold in just one day, according to a new study by Johns Hopkins researchers.

The report, published in the American Journal of Transplantation, indicates that social media may be a successful way to make people more aware of the organ shortage in the U.S.

The rise was seen in May 2012 when Facebook developed a way for people to share their organ donor status with friends. The social-networking site allowed users to make their status official on state department of motor vehicle websites by providing easy links.

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Research leader, Andrew M. Cameron, M.D., Ph.D., an associate professor of surgery at the Johns Hopkins University School of Medicine, said:

“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.

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.”

Although the number of patients waiting for transplants has risen 10-fold over the past 20 years, the number of donors has continued to be fairly stable, even though great effort has been made to change these statistics.

In the U.S. there are currently over 118,000 patients on waiting lists for livers, kidneys, and other organs. Unfortunately, thousands of these people will not survive long enough to receive transplants.

Each year, between 5,000 and 10,000 people die whose organs would be acceptable for transplant but cannot be used because they had not consented to be donors.

In the U.S. permission to remove organs from a deceased person is needed from either the patient before passing away or their family at the time of the person’s death. Experts believe that over time, approximately 100 million Americans have registered to be organ donors.

The researchers examined data from Facebook and online motor vehicle registration websites and discovered that on the day the strategy started (May 1, 2012), 57,451 users of the networking site updated their profiles to share their organ donor status.

On the first day, there were 13,012 new online donor registrations – an enormous number compared to the average daily registration rate of 616 nationwide.

“Registrations varied by state, with the first-day effect in Michigan rising nearly seven-fold and with nearly 109 times as many online registrations in Georgia as on a typical day,” the authors said.

New York and Texas, states that have some of the lowest organ donation rates, experienced some of biggest increases on the first day, which was encouraging to see, Cameron explained.

Although the number of people registering online decreased over the next 12 days, it was still two times the normal rate at the end of that research period.

“The half-life of a movement online is often just hours,” Cameron added. “This had a very powerful, lasting effect. But we need to find a way to keep the conversation going.”

Although there has been a rise in the number of declared organ donors, it could be several years before experts establish whether those people end up donating their organs.

The Facebook organ donor project came about after Cameron, a transplant surgeon, had many conversations about organ shortage with a classmate, Sheryl Sandberg, a current Facebook chief operating officer, at their 20th Harvard University reunion in 2011.

The concept of having a place in the Facebook timeline for users to share organ donor status was thought of after several discussions.

“The key to continuing the push for more organ donors is figuring out a way to bring back some of the lost attention of those early days of the campaign and to find a way to get it to again go viral,” according to the researchers.

Facebook officials have been talking about relaunching it on its mobile platform, altering its prominence on the Web version, or even providing coupons or other incentives for users who declare they are organ donors, Cameron said.

Social media has demonstrated in recent years that it is not just a place to share pictures of your family or what you ate for dinner. It can also be an instrument of social change, such as its use after natural disasters like the Oklahoma tornado that recently hit.

Cameron concluded:

“This was the first effort like this designed to mobilize people for a public health cause. Now we want to build on that. Studying the response to the organ donor effort is the next step in the process of using social media for social good.”

A previous study said that there is an urgent need to increase the number of organ donors from black and minority ethnic groups in countries such as the UK, US, Canada, and the Netherlands (countries that have a strong tradition of immigration) in order to tackle inequalities in access and waiting times.

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