This week The New Yorker ran a fascinating article called, "To Donate Your Kidney, Click Here". More and more people are turning to Facebook to try and find living organ donors. And while many have found tremendous success using this strategy, the article highlights the serious ethical concerns that now face the medical and public health communities in light of this trend.
Concerns About Disparities
The Advocates
While data show that Facebook is the most popular social networking site among online adults, we do not know how social media advocacy skills translate across demographic variables. In The New Yorker article, Dr. Dan O'Connor of Johns Hopkins University asks "“Whenever you’re using platforms like Facebook, the question is, what kind of person, what demographic profile has the time and energy and communication skills to make this work?” [bolding added]
The Donors
Dr. Michael Shapiro (who chooses not to perform kidney transplants on donor-recipient pairs who met through online advertising) said, “It’s not hard to imagine that if you’re attractive and young and appealing, it’s easier to get people to donate to you than if you’re short or ugly or have a hunchback. And that’s not the way we want the system to work." [bolding added]
While there is limited research regarding Facebook donor-recipient matching, research out of Loyola University offers support for Dr. Shapiro's concerns. After examining Facebook pages seeking kidney donation, the researchers found that certain types of pages (i.e., white patients and those with more posts) were more likely to have people come forward and get tested to be a possible donor.
Leveling The Playing Field
As with any health or access disparity, public health needs to innovate solutions to narrow the gap. The New Yorker article discussed Dr. Andrew Cameron (a transplant surgeon at Johns Hopkins) who is working on one possible solution. He is developing a smartphone application which may level the playing field for patients/families for which social media tools and advocacy resources are less intuitive or accessible. The app would offer a “template” for those in need of organs to tell their story, and would provide a system for those users to connect directly with transplant centers and social media resources.
What Do You Think?
- Does donor matching on Facebook provide an advantage to certain demographic groups?
- What can we do to level the playing field for those patients/families with (1) limited access to social media tools or advocacy skills? (2) stories that may be "less attractive" to the public?
- Are you surprised that some surgeons (e.g., Dr. Michael Shapiro profiled in The New Yorker) choose not to operate on pairs who meet through online advertising?
Bonus Read: This is not the first time that Facebook has been part of the organ donation dialogue. Last May I wrote about Facebook's "share life" tool, which allows users to share their organ donation status on their timeline. Since then, research has shown that the tool is effective in increasing donor numbers.
One thing I try to do at Find a Kidney Central is give advice to those with kidney pages on Facebook in order to level the social media playing field. Every person in need has a story to tell. Each story is unique and just as important as the next. These pages are a way for people to get their stories out there. What I tell potential donors is to look for someone whose story touches their heart for some reason or another.
ReplyDeleteThe connections made via these kidney pages on Facebook are truly remarkable. These pages are about much more than a means to "provide an advantage to certain demographic groups." Yes, people are looking for a donor, but these pages are about much more. Those using social media as a means to find a kidney are merely becoming an advocate for themselves, all while spreading awareness for the cause and becoming a support system for each other.
As far as being worried about leveling the playing field for those without access to social media or media skills; I have, on numerous occasions, started pages for people who were not sure how to start the page themselves. I also provide step by step instructions on how to create a page. My mission is not to get kidneys for those that are of certain demographic groups. My mission at Find a Kidney Central is to help ALL.
Thank you so much for your comment! I was hoping that someone from Find a Kidney Central would jump into the conversation and offer the perspective of those who manage/use your pages. It is wonderful to hear that you have already identified that need (i.e., people without access to social media/advocacy skills) and have been addressing it by (1) starting pages for them and (2) providing step by step instructions. It is great to learn more about your work. Thank you again for reading Pop Health and for contributing your perspective! Best, Leah
ReplyDeleteWhy does it have to be fair? Donating an organ is a generous and voluntary action and if someone wants to give, they should be able to select a (matching) recipient.
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