Organ Donation Registration, Meet the 21st Century

Organ Donation Registration, Meet the 21st Century
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The organ donation and transplantation system in the United States is working... sometimes. For those that receive the gift of life (including yours truly), the system has indeed worked. Stars aligned, prayers were answered, and a helicopter carrying the precious cargo arrived in time. We got to live happily ever after. We, the lucky organ recipients, are eternally grateful for the miraculous gift that we have received, but thousands more face obstacles outside of their own control. These nameless, faceless Americans sit on the infamous and torturous "list" waiting for their gift; folks on dialysis who spend their weeks exhausted from either preparing for or recovering from this invasive, life-sustaining process; folks who can't walk a block without being out of breath due to cardiac failure; folks who live their lives staring down death as their chances of receiving an organ decrease exponentially with each passing day. We can no longer act as if the current system of organ procurement is good enough because, for far too many individuals and their families, it isn't. So the question is: are there alternative ways to increase supply?

THE LIST - In 1996, there were about 50,000 people on the United States transplant waiting list. In 2006, there were 95,000 on the list. Today, that number has ballooned to over 125,000.

TRANSPLANTS - In the United States, there are about 85 transplants performed each day, with the United Network of Organ Sharing (UNOS) reporting over 30,000 transplants in 2015 (an all-time high); yet even with this growth in successful outcomes, an average of 22 people waiting on the list die each day. Instead of diminishing, the problem is actually intensifying. According to Donate Life America, we are adding an average of 144 people to the list each day. At this rate, the list will eclipse 200,000 by 2025.

THE CURRENT SOLUTION - The modern ecosystem of organ donation, started from scratch some fifty years ago, has succeeded in registering nearly half of all American adults despite its cumbersome ties to the DMV. This is no small feat and has been driven primarily by a passionate, motivated workforce pushing direct registration. Yet there is still that other half, those millions of unaccounted-for individuals who could help close the list's gap with the check of a box: how can we better get in front of them? In this, the age of social media, perhaps it is time we start tapping into the ways that people actually communicate.

THE NEXT FRONTIER - A cursory glance at any group of teens, huddled around each other with heads buried in their palms, confirms the obvious: young Americans now live through their phones. The same device that famously allows you to swap faces with your pet cat and blast a video of it to all your friends can now capture your intentions as an organ donor. Instead of taking four days or four hours or even four minutes, you can now declare that you support organ donation in approximately four seconds, depending on the agility of your thumbs. In 2014, Greg Segal and Jenna Arnold launched a nonprofit called ORGANIZE to re-imagine the donor registration system by leveraging social media. Since January 2015, our Nevada Organ Procurement Organization (OPO), the Nevada Donor Network, has been their pilot partner. Whenever one of our coordinators searches ORGANIZE's database (dubbed "53") to see whether a potential donor had registered, ORGANIZE delivers every public-facing post that person had ever made on Instagram or Twitter using key hashtags (e.g. "I want to be an #organdonor"). These posts are then made available to next of kin as they try to answer the question: what did my loved one want?

THE SKEPTICS AND THE HEROES - The skeptics will say, "But it is not a registry, so therefore it is not legally binding." Agreed, not sure there is anything legally binding about a hashtag. However, this is not the intention of the declaration. Rather, it is a mechanism to help inform family members of your desires, and it is the responsibility of OPOs to provide these families with every piece of available information they may need, especially when that information is freely accessible. Family services advocates, who speak directly to the next of kin of any prospective organ donor, are the unsung heroes of an industry that has its share of heroic characters. These folks -- professionals who comfort families during their most difficult times - often hear the following from family members whose loved ones are not registered: "I just wish I knew what he wanted me to do."

Herein lies the beauty of a social media-based recognition engine: we can now provide that answer; we can help a grieving family understand the true wishes of their loved one - and it works. In our first year of piloting with ORGANIZE and 53, we've had 11 cases in which the donor was not registered but had shared their wishes via social media, a 12% increase in donors from the previous year. This was done on virtually no budget for marketing and, applied across the entire industry, would represent nearly 4,000 more lives saved, all by simply informing families of the existing public declarations made by their loved one.

DO SOMETHING - Here's how you help: share this article on social media with the copy "I want to be an #organdonor" and ask your friends and family to do the same.

* Where the word organ donation is used - it should be noted that organ donation in general refers to organ, eye and tissue donation in the United States.

This post is part of a series produced by The Huffington Post and ORGANIZE, a non-profit looking to end the organ donation crisis by identifying and building on opportunities for improvement through technology, advocacy, and policy. Learn more at

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