Social Media and Organ Donor Registration: The Facebook Effect

Authors


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.

Abbreviations
DMV

Department of Motor Vehicles

FB

Facebook.

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.

Materials and Methods

Data sources

We studied the number of Facebook organ donor profile updates in the United States from May 1, 2012 to May 28, 2012. Since an organ donor profile update does not necessarily correlate with a new online donor registration, we also studied new organ donor registrations in collaboration with Donate Life America and state donor registries. New registrations were identified by origin (online or DMV) and evaluated both as relative increase over baseline (based on the average number of new registrations for that day of the week over the preceding 4 months) and as new registrations per million (based on state population of persons aged 18 or older). Data were available for online registration from May 1, 2012 to May 13, 2012 for 43 of 50 states (excluding Alaska, Delaware, North Dakota, New Jersey, Pennsylvania, South Dakota and West Virginia) as well as the District of Columbia; the six New England states collected organ donor registrations via a single website, and therefore were treated as a single entity (denoted “NW”). Baseline new registrations stratified by day of the week were available for 21 states and used (by proportion) to calculate the baseline new registrations stratified by day of week for states where only summary (averaged over all days of the week) data were available. DMV data were available for four states (Michigan, Montana, Texas and Washington) from May 1, 2012 to May 3, 2012.

Increase in registrations

The number of new registrations per day on or after May 1, minus the average number of new registrations per day over the baseline period, was designated “attributable new registrations.” The ratio of registrations per day on or after May 1 to registrations per day during the baseline period was designated as the “Facebook effect.” For example, a state that had averaged 6 new registrations per day before May 1, and had collected 51 new registrations on May 1, would have had 51-6 or 45 attributable new registrations and a Facebook effect of 51/6 or 8.5×. We calculated these terms for each state, and nationwide, on each day of May 1–13, the period for which data were available from state registries.

Temporal pattern of increased registration

To investigate whether states with a higher Facebook effect on the first day of the intervention continued to have a higher Facebook effect on subsequent days, we graphed the Facebook effect for each day, stratified by quintile of the May 1 state-level Facebook effect. Additionally, we computed the correlation between the state-level Facebook effects on May 1 and the Facebook effects for each subsequent day.

Factors associated with increased registration

To investigate the relationship between online registration rates during the baseline period and rates after the Facebook organ donor initiative was introduced, we produced scatter plots comparing the baseline state registration rate per million population to the May 1 registration rate per million population. We tested for statistical significance using linear regression, weighted by state population. We used the same methods to investigate the relationship between registration rates in each state during the baseline period and state-level Facebook effect.

Results

Increase in registrations

On the day of the announcement of the Facebook organ donor initiative, 57 451 Facebook users updated their organ donor profile on the site (Figure 1A). The number of new updates per day decreased steadily to 538 on May 13, increased to 2454 on May 14 and then decreased to 316 on May 27. Similarly, on the first day of the initiative, there were 13 012 new online donor registrations across the 44 states for which data were available, representing a 21.2-fold increase over the baseline daily registration rate of 616. The number dropped over the next 12 days, but remained at an elevated rate (Table 1). Both Facebook profile updates and new online donor registrations were fewer on weekends than on weekdays. The total number of new registrations over the 13-day study period was 39 818, which was 32 958 more than would have been expected from the baseline registration rate. The difference in profile updates and new online registrations (approximately 67 000) represents those who updated their Facebook profile but had registered at the DMV previously or elected not to continue with the online process of registration.

Figure 1.

(A) Facebook organ donor status updates, and online registrations with state donor registries, following the introduction of the Facebook organ donor status tool. Data shown on a log scale. Red numbers along the X axis denote weekend days. (B) Comparison of the proportional increase relative to baseline in online new donor registrations and DMV new donor registrations, May 1–3, 2012. Based on data from four states: Michigan, Montana, Texas and Washington. The increase in online registrations in these four states was similar to the increase observed nationwide, but DMV registrations saw only a slight increase in registrations.

Table 1. New donor registrations per day in the United States during the first 13 days for which the Facebook organ donor status tool was available
DateTotal new registrationsBaseline registrationsAttributable new registrationsFacebook effect
  1. Data were available for all but seven states (AK, DE, NJ, ND, PA, SD, WV). “Baseline registrations” refers to the average number of new registrations for that day of the week over the 4 months prior to the Facebook initiative. “Attributable new registrations” refers to the daily total minus the baseline registrations. “Facebook effect” refers to the ratio of total new registrations to the baseline registrations.
May 1, 201213 01261612 39621.1×
May 2, 201211 55457510 97920.1×
May 3, 2012433157237597.6×
May 4, 2012221152416874.2×
May 5, 201210064056012.5×
May 6, 201211364237132.7×
May 7, 201214276307972.3×
May 8, 201213586167422.2×
May 9, 201210985755231.9×
May 10, 20128865723141.6×
May 11, 20128335243091.6×
May 12, 2012502405971.2×
May 13, 2012464423411.1×
Total39 818687532 9435.8×

In the four states for which DMV data were available, online registration showed a Facebook effect similar to the national effect: 13.7× on May 1, 12.9× on May 2 and 5.2× on May 3 (Figure 1B). However, DMV registration barely increased over this period, with a change of 1.2× on May 1 and May 2 and 1.0× (baseline) on May 3.

Temporal pattern of increased registration

The state-level Facebook effect for May 1 ranged from 6.9× (Michigan) to 108.9× (Georgia) (Figure 2). States with a higher Facebook effect on May 1 continued to have a higher Facebook effect on subsequent days, particularly in the first week (Figure 3); correlation between state-level Facebook effect in the first week (between May 1 and May 6) was 0.808. Among those states with the highest impact (top quintile), the overall Facebook effect was 63.5× on May 1 and 5.9× on May 6; among those with the lowest impact (bottom quintile), the overall Facebook effect was 7.7× on May 1 and 1.6× on May 6.

Figure 2.

Facebook effect (relative increase in online organ donor registrations) on the first day of the Facebook organ donor initiative, by state.

Figure 3.

Magnitude of Facebook effect by state, by quintile of Facebook effect on the first day for which the organ donation status module was available. States that had a higher Facebook effect on the first day continued to have a higher Facebook effect on subsequent days. Facebook effect (relative growth in donor registration resulting from Facebook organ donor initiative) is shown on a log scale.

Factors associated with increased registration

States with higher rates of online registration before the Facebook organ donor initiative had, on average, higher rates of online registration after the initiative was introduced (Figure 4A), but a lower proportional increase (a lower Facebook effect; Figure 4B) than states with lower rates of online registration before the Facebook organ donor initiative was begun. The association between baseline registration and registration after the initiative was suggestive, but not statistically significant; one additional registration per day per million people during baseline period was associated with 4.0 additional registrations per million people on May 1 (95% CI −0.3 to +8.3, p = 0.10; Figure 4A). Conversely, one additional registration per day per million people during baseline period was associated with a decrease in Facebook effect of 5.8 (95% CI −8.7 to −3.0, p < 0.001; Figure 4B).

Figure 4.

Comparison of new donor registrations by state before and after the Facebook donor status tool became available. New donor registrations per capita after the Facebook tool became available were somewhat higher in states where baseline registrations per capita had been higher (A). However, the Facebook effect was higher in states where baseline registrations per capita had been lower (B). The line in each graph shows association between the two variables, calculated using linear regression, weighted by state population.

Discussion

In this national study of the immediate impact of a social media–based intervention on organ donor registration rates, we have shown that online registration rates in the United States increased dramatically after the Facebook organ donor initiative. The effect of this initiative varied by state, with the impact on registration rates ranging from 6.9× to 108.9× on the first day.

The organ shortage crisis in the United States has both medical and social causes. The Institute of Medicine has estimated that an additional 5000–10 000 deceased patients per year would be appropriate for donation but are lost due to failure to obtain consent [13]. Given that each donor can provide up to eight solid organs and additional tissue for transplantation, improved donation rates would have a major impact on the organ shortage. However, lack of consent for deceased donation is prevalent and multifactorial [14]. While the American public, when polled, is overwhelmingly (95%) supportive of donation and organ transplantation, only 30–50% in any given state are ultimately registered by the DMV [15]. This disconnect suggests ongoing barriers to donor registration or at least inefficiencies in our current system for obtaining registrants, which require the impact of any educational effort to be remembered and acted upon in the future, perhaps months to years later during the next trip to the DMV. Our findings highlight the potential for non-DMV based interventions, such as social network based online registrations or other novel approaches, which allow for immediate action when an educational message or a friend's input is received. Additionally, DMV and social media efforts need not be mutually exclusive: if a new registrant at the DMV is then also encouraged to announce that decision on Facebook, the power of the single registration may be multiplied manyfold by the influence of the message as it spreads in the social network.

Changing opinions and behaviors on a sensitive and difficult topic may prove more amenable to discussion in a different environment, that is “among friends,” compared with the DMV and other previously targeted areas. A social media approach has been used successfully in other areas ranging from encouraging participation in disaster relief efforts to discouraging bullying among youths [16-18], although metrics to accurately quantify the impact of these interventions have been difficult to establish. Not only does organ donor declaration seem uniquely suited to social media dissemination, but it is also an area where the outcomes (namely online donor registration) are immediately measurable.

The Facebook donor initiative also provides an easy portal and intermittent reminder for those who might consider donor registration in the future. In other words, every time a network member registers, an announcement will be sent out to hundreds or thousands of other potential registrants. This “chronic virality” may give the Facebook organ donor initiative a chance of sustained impact that other previous media campaigns have lacked. While the impact of the introduction of the Facebook organ donor initiative decreased over the 2 weeks examined, it is important to note that the effect measured in this study reflects the impact of the intervention on only the 30% of Facebook members currently using the “Timeline” profile. As Facebook rolls out this profile to the rest of its US members, more will have access to the Organ Donor status option, and more are likely to participate. While the organ donor initiative is currently limited to English and to the United States, it will be added to other countries' users and other languages sequentially, and made available on mobile phone platforms as well. As time progresses, the majority of Facebook's nearly one billion members worldwide will thus have immediate access to convenient organ donor registration, educational materials about the process and the ability to communicate their decision to a receptive, friendly audience. Of note, an online effort like the Facebook organ donor initiative does not require the preexistence of a nationwide organ donor registry; in fact, its use may represent the only documented source of an individual's wishes in an area of the world which is still without a registry. However, the initiative's demonstrable efficacy is enhanced when it can be linked to a preexistent online registry, as our study illustrates. There remains great worldwide variability in deceased organ donation registries [19] and Facebook and Donate Life America may be able to participate in the online construction of such resources in countries where they do not exist or are being developed and can be encouraged by the rollout of the donor initiative, that is, Mexico [20-22].

There are several limitations of this analysis that merit discussion. First, this report describes only the immediate impact of this social network based intervention; while the immediate impact was evident, its durability remains unknown and was obviously diminishing. Ongoing efforts will still be required to direct people toward organ donation and now additionally toward announcing their decision more directly to their friends. Second, it will take years to see an increase in actual deceased organ donations resulting from this effort, so we are limited to organ donor registration as a surrogate endpoint. Finally, the extent to which the dramatic increase in donor registration was due to social network communication versus the conventional media announcements that accompanied it cannot be separated through an observational approach. However, since the increase in new donor registrations was largely limited to online registrations, it is unlikely that the increase was caused by events which would affect people's overall willingness to donate (e.g. public service announcements aimed at the general population). Also, major national press coverage of other transplantation stories has not translated into this level of increase in donor registry activity [23-27]. The minimal increase in DMV new donor registrations during May 1 and 2 may reflect what little effect was derived from conventional media coverage of this unique Facebook initiative.

Some have questioned whether this online initiative may raise privacy issues. As information about the decision to donate is voluntarily shared on Facebook either publicly or with only family or friends as specified by the user, privacy issues are not relevant simply because the medium is online. While many issues regarding one's medical information are trending toward restriction, Facebook remains a communication utility that here simply serves to facilitate the voluntary sharing of information which the user has dictated. Healthcare providers and many others will continue to encourage the population to share with their loved ones their wishes regarding donation after their death and updating one's profile on Facebook may serve as a reminder or opportunity to have that discussion verbally with family members as well.

In the 13 days following the Facebook Organ Donor Initiative's rollout, approximately 100 000 Facebook members selected this option, and approximately 33 000 Facebook members who were not previously designated organ donors completed this designation online. This initial “early adopter” cohort represents only <0.1% of Facebook users in the United States and yet the immediate impact on donation registration rates in the United States was greater than that seen with prior media campaigns. To better understand why the Facebook organ donation effort mobilized such a small percentage of potential online participants, it may be helpful to examine a recently published analogous effort attempting to utilize social media to increase voter registration [28]. Fowler et al. constructed a randomized controlled trial of political mobilization messages delivered on election day to 61 million Facebook users and compared voting behavior changes to a control group that received informational messages devoid of “social message”. These researchers were able to demonstrate a very small but significant impact of this intervention: users who received the social message were 0.39% more likely to vote than users who received the informational message or no message at all. This effect, like that seen with our organ donation initiative, was indeed small, far <1%. However, in the political mobilization study, because of the large scope of the network utilized (61 million), the researchers were able to demonstrate that the Facebook message resulted in an additional 340 000 votes, certainly enough to alter election results. Similarly with the organ donation initiative, expecting more dramatic initial results may be unrealistic, but multiplying a small impact by a large network may be enough to eventually save lives.

The next challenge for efforts like the organ donor initiative will be utilization of social media applications like Facebook, Twitter, YouTube or Instagram more effectively and more durably. D'Alessandro reported that among college students, social-based communications had the greatest impact for donor registration and described a social media campaign utilizing Facebook and YouTube video submissions that resulted in 9000 documented donor registrations [29]. Integrating the use of novel social media with existing mass media donation campaigns may prove most productive. Stefanone demonstrated in New York via a comparative approach with three different online media formats that while traditional online advertising offered the greatest message exposure, when combined with student seeders promoting donation using social network sites and challenge campaigns the result was an increase in request for organ donor cards and registrations [30]. The donation initiative described here ultimately had a diminishing impact over the 2 weeks examined, a fate longer but similar to other online media campaigns. In order to re-energize this effort and plan others, modifications similar to those employed by Stefanone could be utilized. Experts in the field of behavioral economics have examined organ donation barriers and suggest that a mandated choice approach or modest incentives to register would benefit our Facebook organ donation initiative relaunch as well [31].

Social media has begun to play a role in public health campaigns in areas as diverse as suicide prevention, childhood obesity and attitude toward vaccination [32-34], and the CDC has now defined a set of social media tools, guidelines and best practices [35]. The spread of complex social behaviors with relevance to the public health, such as alcohol consumption, smoking or obesity has been tracked through social networks such as the 12 000 person Framingham Heart Study Cohort [36-38]. Studying the spread of registration for organ donation through the billion person Facebook social network will represent a similar opportunity to learn how such medical health related behaviors and decisions are transmitted within small and large interconnected groups. This knowledge will be helpful as we design future interventions to improve the low, static organ donation rates that continue to complicate the organ availability crisis in transplantation or reapproach other refractory public health problems via social media and social networks.

Acknowledgments

We thank Mark Zuckerberg, Joel Kaplan, Sarah Feinberg and especially Sheryl Sandberg at Facebook for conception of, collaboration on and commitment to the organ donor initiative, ABC for promotion of the initiative's rollout, Jack Lake and Walter Graham at UNOS and Mitch Henry at the ASTS for support of the initiative, Corey Wickliffe for data analysis and figure preparation, and the state donor registries for prompt reporting of activity during the May 1–13 period. No funding sources were used in this analysis or preparation of the manuscript.

Disclosure

The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation.

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