When Rochelle, a patient at Northwestern University's Comprehensive Transplant Center, first learned that no one in her immediate family was a suitable candidate for partial liver donation, she did what most do in today's day and age - she took to Facebook. Posting her need for a life-saving organ that could be facilitated through a living donor, Rochelle quickly fielded a candidate list of over twenty people, strangers included. By telling her story to the world, she found people who listened, sympathized, and acted, and in the process created a potential donor pool well beyond her own needs.
Social media is changing the way people who need organ transplants find donors, and in many ways is "leveling the playing field." Platforms like Facebook, Instagram, Twitter, Snapchat, and Periscope allow anyone to share their own stories and declarations with the public in real-time, allowing for immeasurable outreach as individuals across the world connect over common understanding. The best part? All of this is at no monetary cost to people who need organs.
When these stories go viral online, we often see a tangible spike in donation. It is exciting to consider that while only one good-Samaritan can actually donate to any given person, all of those who are moved to come forward are still potential matches for a different recipient. One person's story actually has the capacity to save dozens of lives.
Learning of this new, viral dynamic led me to ask, 'what should we do with all of the potential donors who raise their hands after hearing patients' stories on social media?' I currently have a pile of papers with potential donors on my desk, all of whom came forward after a patient posted the need for an organ on social media. Managing this volume of willing donors is very resource- and time-intensive, posing a logistical challenge to transplant centers. We are not reaching them with optimal efficiency, catching them between swim meets and tennis matches, and therefore not giving the donor the due respect they deserve. It is unfair to them, and also an ineffective system for us to determine their true interest.
As a way of making this stack of potential donors more manageable, I believe there is an opportunity to build a database to capture the information provided by these potential donors--an Altruistic, Non-Directed Living Donor Database (ANDLDD). The main question to be considered is not "How should we build this?" but, rather, "Is this ethical?" Is it ethical to create a database of potential living donors who came forward to donate for a specific, even if unknown, individual?
Transplant centers are historically reluctant to share information, which undoubtedly would pose a barrier to this list, especially when the world of social media knows limited geographic bounds. Transplant centers spend a lot of time and effort processing potential living donors and may not want to "lose" them to a national registry that could be used by another center. However, a database could serve a very important purpose--it could act as a forum for centralizing education, allowing people to learn how they can help patients in need of transplants. Furthermore, it would point transplant centers in the right direction in terms of identifying living donors and, ultimately, result in more transplants.
"The American Society of Transplant Surgeons (ASTS) is pleased to be part of this initiative," said Dr. Charlie Miller, ASTS President. "As the leading Society representing those involved in transplant surgery, we want to help make it as appropriate and useful as possible in the clinical setting. It's important for those of us familiar with the process to make it as effective as possible."
Kristel Clayville, a chaplain and ethicist at the University of Chicago, has wisely noted that "this kind of registry makes [the medical community] stewards of resources, and that creates obligations. What kind of obligations would this impose on the transplant centers?" The very role of the transplant center itself may be in transition.
If we were to create a database, what rules would we put in place to ensure that it is ethical? Should there be a difference between liver and kidney donors? How will donors be assessed? Can donors choose to whom they will donate, or will the center choose? The donors did come forward to donate to a specific person, so should they have the option to make the choice of recipient again? And finally, who would own and run the ANDLDD? Would it be transplant center-specific, regionally-held, or nationally-managed?
While Rochelle was enterprising and fortunate enough to gain attention for her cause online, there are thousands more who could benefit from the fruits of her personal awareness campaign. Rochelle was able to meet Alyssa, a complete stranger who raised her hand after reading that Facebook post, and who would later donate the right lobe of her liver to that former stranger (both are doing very well!). But those 20+ others who came forward would surely match with 20+ others in need of help and with their own story to tell - we just need to help them find their voice and reach their audience.
That is why it is our responsibility as surgeons to ensure that all those individuals who express interest in donation and do not match with their initial recipient be presented the opportunity to do so in the future. We must preserve as much goodwill capital as we are able to generate, and social media has created an untethered outlet to goodwill generation. There are thousands of altruistic individuals who want a path to help another in need, and we have the capacity to bring them together.
The ANDLDD is a good place to start.
*To begin to tackle these questions, the American Society of Transplant Surgeons, Northwestern Division of Transplant, and ORGANIZE are launching a collaborative to explore the design and development of a framework for an ANDLDD. This beta product will help transplant centers guide anonymous willing, living donors to donation opportunities.
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 ORGANIZE.org
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