WASHINGTON -- Promoting living kidney donation on social networks such as Facebook -- which recently allowed users to share their organ donor status -- could increase the organ donor pool, researchers said here.
But first, researchers need to identify the factors and strategies on these networks that facilitate successful transplants, Alex Chang, MD, of Loyola University Medical Center in Maywood, Ill., and colleagues reported at the National Kidney Foundation meeting.
Action Points
- This study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
- Note that this study suggests that social media such as Facebook are being used to solicit living kidney donors and may be an emerging, influential tool to expand living kidney donation.
Social media is "a natural vehicle to increase kidney transplant, but there hasn't been a lot of research on it," Chang told 番茄社区. Further study could elucidate improved strategies for connecting donors and recipients and could help address any ethical considerations, he said.
Such work is needed because the topic "is going to explode. It's already happening," Chang said.
So in October 2011, he and colleagues searched Facebook pages for terms that were related to kidney donation and ended up including a total of 91 profiles in their final analysis.
They found that patients who posted their need of a kidney transplant online ranged in age from 2 to 69. Patients themselves created 37% of the pages, while 31% were created by their children, and 32% by other family members.
Disclosure of patient information was variable, ranging from a simple request for a kidney donation to more in-depth pages that provided details on medical history, photographs, and contact information.
Although Chang and colleagues weren't able to determine the exact contribution of Facebook in terms of soliciting donors, they found that 12% of pages ultimately reported a successful transplant, while 30% reported having potential donors being tested for a match.
"It's hard to figure out who received a kidney and who was successful at using Facebook and how it was mediating their success," Chang told 番茄社区. "But it looked like some people were very successful in spreading the message, by getting friends to post on their walls, finding random people in their networks to step up and be tested and eventually receive a transplant."
The researchers also tried to assess patient characteristics for those that had more successful social media campaigns. Patients who had donors tested were more likely to be white, had polycystic kidney disease, and had many wall posts.
Those without evidence of donors being tested were less likely to provide information on the cause of their disease or blood type.
In multivariate analyses, however, only white race (OR 50.48, 95% CI 2.97 to 58.45) and having more than 50 posts by others (OR 88.04, 95% CI 3.80 to 2039.57) on a Facebook page remained associated with success in having donors tested.
Chang said one of the more worrisome issues was that there were numerous offers on Facebook to sell kidneys, which were posted on 3% of the pages. Most of these solicitations came from patients in developing nations, he said.
The researchers also found that explanations of risks and benefits of becoming a donor were inadequate with only 5% of pages mentioning any risks and only 11% mentioning the costs associated with transplant.
The medical community also needs to "take a deep look into using social media for any type of medical purpose in terms of confidentiality," Chang said.
He added that the study was initiated well before the Facebook organ donation initiative.
"We noticed that few of the pages even mentioned a sign-up for the organ registry," he said. "Our initial thought was, 'Wouldn't it be great if Facebook encouraged people to mark on their pages whether they were an organ donor?' Then other people could see it and would be encouraged to donate too."
Chang said the next step is to contact the patients who own the Facebook pages assessed in the study and see how the site affected their ability to find a donor, and whether it allowed them to connect with people they wouldn't have otherwise connected with without social media.
The study was limited because the only available information was that shared by the page creator, and the researchers couldn't verify the accuracy of that information.
Disclosures
The researchers reported no conflicts of interest.
Primary Source
National Kidney Foundation
Source Reference: Turner H, et al "Social media and living kidney donor solicitation" NKF 2012.