While at the National Institutes of Health in 1967 and 1968, we were involved in the design and drafting of the Uniform Anatomical Gift Act, in partnership with the Commissioners on Uniform State Laws and with the support of several health care organizations. In drafting the model law, we had three major goals: 1) clarify unanswered legal questions about donation, including exactly who could donate, 2) create an easy-to-use legal donation mechanism – the organ donor card, and 3) encourage the law’s widespread adoption. By 1971, all three goals were achieved and the Uniform Act was enacted in all 50 states, with little or no modification.
At that time, the emergence of heart transplantation had dramatically increased public interest and awareness, and polls showed very favorable public attitudes towards donation. We and others believed that the major future focus should be on research and improved care techniques to increase the likelihood of transplants being successful in the long term.
Today, the good news is that antirejection drugs and other therapies are far more effective, active organ donor registries are in place, and thousands of lives have been saved through successful donation and transplantation. Unfortunately, despite many diligent public awareness efforts, there are still long waiting lists for donors, More than 6,000 people in the U.S. died last year without receiving a needed organ.
Could the new era of social media help change this picture? On May 1, Mark Zuckerberg, the president and CEO of Facebook, following a suggestion by Facebook COO Sheryl Sandberg, announced a new feature designed to facilitate an individual’s wish to become an organ or tissue donor. The New YorkTimes described the decision as “a rare foray by Facebook, into social engineering from social networking, and one with potentially profound effect . . .”
The announcement was greeted with great enthusiasm by leaders in the organ donation field. Andrew M. Cameron, the surgical director of liver transplantation at Johns Hopkins Hospital, stated in the New York Times, “This is going to be an historic day in transplant. The math will radically change, and may well eliminate the problem” of the donor shortage.
Today, the biggest challenge to reducing waiting lists is the failure of most people to express their intentions to donate and register as a donor. The Facebook enhancement could significantly help. Facebook offers a convenient link that takes users directly to their state’s organ donor Web site. Signing up is simple. In less than five minutes, Facebook users can move from being motivated by a friend’s proclamation of becoming a donor, to becoming a donor themselves. Users can add their sign up to their time lines, which encourages others to do so.
According to Malcolm Gladwell’s model of how a "social epidemic" develops, Facebook and its users would seem to have all requisite factors needed to create an epidemic of donations. The right people are involved in the movement, the environment is right, and the mechanism to donate is easy. There is a clear message and the need for donated organs is urgent.
What has happened after the May 1 announcement? More than 300,000 Facebook users worldwide have used the organ donation tool and shared their organ donor status with their friends, says Sarah Feinberg, who directs Facebook's organ donation initiative.
According to David Fleming, CEO of Donate Life America, the initial response “dwarfs any past organ donation initiative.” By the end of the day of the announcement, 6,000 people had enrolled through 22 state registries.
Charlene Zettel, the CEO of Donate California, reported that California had experienced a remarkable uptick. Typically, about 70 people register as organ donors online each day; in the 24 hours following the Facebook announcement, about 3,900 Californians signed up.
However, as the graphs here, from the Donate Life California donor registry, show, the dramatic increase in registered organ donors was quickly followed by a dramatic decline. Within two weeks, the rate of registration of new organ donors returned to previous levels. Had the spark of change had been extinguished?
Perhaps missing is the repeated cuing that can help drive individual action. An annual day to celebrate registered organ donors would be one way to enhance cuing. Asking state donor organizations to provide Facebook with real-time updates on the growing number of registered donors might be another. Historically, 98 percent of registered organ donations come through the states’ departments of motor vehicles donor registration programs. While this is the most successful strategy for recruiting registered donors in most states, the numbers could pale by comparison if the full potential of social media could be harnessed by state donor registries.
Interactions with the DMV occur infrequently for most young people, compared to Facebook interactions, which occur multiple times every day. Indeed, if the full potential of Facebook and other social media were to be engaged over an extended period of time, it is possible that enough young people could be registered to address the needs of their own generation and beyond.
Inspiring stories of lives saved through organ and tissue donation could be posted on Facebook or tweeted to friends. To create the “stickiness” and staying power Gladwell describes, organ donation organizations need to embrace this new technology in a way that translates possibilities into reality.
State registries must also be easy to find and use. If the common perception is that in order to register as an organ donor, one needs to go through the DMV, people may be less inclined to donate. But if people know that they can register easily by visiting a Web site and clicking a button or two, their willingness should increase. State registries could include social sharing on their sites, so that once a person joins the registry, he or she has the option to share this information via Facebook, Twitter, and other social networks which should drive awareness among family and friends.
Social media could also allow donor registries to advertise at no cost. Facebook has challenged other technology companies to show corporate leadership and has demonstrated the power of social media to encourage altruism.
Within our grasp is a world where people, families, and loved ones have conversations about their wishes to make a gift of life upon their death. Mark Zuckerberg and Sheryl Sandberg have given us a mechanism whereby lifesaving intent is codified in legally valid registries and which dedicated doctors and nurses can act upon in a timely manner to save or enhance lives. Imagine a future where waiting lists for organs are drastically reduced and where most potential recipients receive a donation within months, instead of years.
Families who have made this ultimate gift of life tell us that organ donation is a rewarding and meaningful act, especially following the death of a loved one. The use of social media to greatly expand the gift of life could be a shining example of the generosity, ethics, and values in America and elsewhere. Let’s work together to make this happen.
This post has been updated.
Blair Sadler, a lawyer, is a Senior Fellow at the Institute for Healthcare Improvement and a member of The Hastings Center’s Board of Directors. Alfred Sadler, a physician, has been a leader of the development of the profession of physician assistants and is completing a book on the subject. They were founding Fellows of the Hastings Center.