Social Media and Organ Donor Registration

The Facebook Effect

A. M. Cameron; A. B. Massie; C. E. Alexander; B. Stewart; R. A. Montgomery; N. R. Benavides; G. D. Fleming; D. L. Segev

Disclosures

American Journal of Transplantation. 2013;13(8):2059-2065. 

In This Article

Abstract and Introduction

Abstract

Despite countless media campaigns, organ donation rates in the United States have remained static while need has risen dramatically. New efforts to increase organ donation through public education are necessary to address the waiting list of over 100,000 patients. On May 1, 2012, the online social network, Facebook, altered its platform to allow members to specify "Organ Donor" as part of their profile. Upon such choice, members were offered a link to their state registry to complete an official designation, and their "friends" in the network were made aware of the new status as a donor. Educational links regarding donation were offered to those considering the new organ donor status. On the first day of the Facebook organ donor initiative, there were 13 054 new online registrations, representing a 21.1-fold increase over the baseline average of 616 registrations. This first-day effect ranged from 6.9× (Michigan) to 108.9× (Georgia). Registration rates remained elevated in the following 12 days. During the same time period, no increase was seen in registrations from the DMV. Novel applications of social media may prove effective in increasing organ donation rates and likewise might be utilized in other refractory public health problems in which communication and education are essential.

Introduction

Currently, the need for organs vastly outpaces the available supply, with over 100 000 Americans waiting on an organ transplant waitlist.[1] Further, the waitlist is probably an underestimate of the actual need, as many who would benefit from transplantation are never listed due to dauntingly long waiting times.[2,3] Over the last 20 years, despite the efforts of many in the public health arena, the number of donors has remained relatively static while the number of individuals awaiting transplantation has increased almost 10-fold.[4]

Mass media campaigns have been successfully utilized to impact various health behaviors including tobacco use and road safety.[5] Similar attempts to promote organ donation awareness and registration have focused on school-based campaigns, worksite events and Department of Motor Vehicle (DMV)-centered interventions [6], and over time approximately 100 million Americans have been registered to donate. While this number represents a significant accomplishment, it still amounts to only around one-third of the country's population and has proved inadequate to meet the need of the growing number added to transplant waitlists. Because donation in the United States occurs through an "opt-in" system, organs may not be removed from a deceased donor without permission from either the individual prior to death or the family at the time of the relative's death. Efforts to increase donation rates have therefore focused on increasing hospital referrals, increasing family consent rates or increasing the public's commitment to donation. Former Department of Health and Human Services (DHHS) secretary Tommy G. Thompson sponsored the National Gift of Life Donation Initiative in 2001, and national events and observances such as the US Transplant games and the annual Donate Life float in the Rose Bowl parade are used to elicit national attention.

In 2003, DHHS launched the "Organ Donation Breakthrough Collaborative" to increase donation in the nation's largest hospitals by implementing widespread use of best practices, and in 2005 transplant centers joined the Collaborative with the goal of also increasing the number of organs recovered per donor.[7] The US Department of Transplantation has offered a series of grant programs to identify and replicate successful initiatives aimed at improving donation rates, and recent programs have targeted subgroups that have been particularly difficult to reach, such as minorities and the young.[8–10] Unfortunately, despite all such efforts, organ donation has increased only slightly in recent years while demand has grown dramatically, leading to long waiting times and high waitlist mortality rates.[11] While some have considered a national switch to an "opt-out" system as a potential solution, recent evidence suggests that such a switch would be unlikely to improve donation rates.[12] Here we describe a novel approach in which a public health awareness campaign designed to increase organ donation was centered around the use of a social media application, Facebook.

Launched in 2004, Facebook is the largest online social network service in the world, with approximately 150 million active users in the United States and over 900 million worldwide. Each Facebook member controls a profile that allows them to describe to a network of selected "friends" various aspects of their life, including their workplace, educational background, marital status, life events, photographs and preferences on a variety of matters. New additions to the profile can be immediately shared with all members of one's network. Two profile platforms exist: the traditional Facebook platform and a new "Timeline" that had been rolled out to approximately 30% of Facebook members by 2012.

After collaborative planning between leadership at Facebook and members of the transplant team at Johns Hopkins, the Living Legacy Foundation of Baltimore, and Donate Life America, a decision was made by Facebook to alter their "Timeline" platform to allow specification of organ donor designation. If a Facebook member decided to select "organ donor" on their profile, they were immediately offered a link to their appropriate state donor registry and their Facebook friends were all made aware of the new profile change. For those not yet decided, educational materials were offered by internet link to provide information on donation facts and myths. Facebook implemented and announced this organ donor initiative on May 1, 2012. We sought to quantify and understand the immediate effect of Facebook's organ donor initiative.

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