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Original Clinical Science—General

How Should Social Media Be Used in Transplantation? A Survey of the American Society of Transplant Surgeons

Henderson, Macey L. JD, PhD1,2; Adler, Joel T. MD, MPH3; Van Pilsum Rasmussen, Sarah E. BA1; Thomas, Alvin G. MSPH1; Herron, Patrick D. DBe4; Waldram, Madeleine M. BA1; Ruck, Jessica M. BS1; Purnell, Tanjala S. PhD, MPH1,5; DiBrito, Sandra R. MD1; Holscher, Courtenay M. MD1; Haugen, Christine E. MD1; Alimi, Yewande MD1; Konel, Jonathan M. MHS1; Eno, Ann K. BS1; Garonzik Wang, Jacqueline M. MD, PhD1; Gordon, Elisa J. PhD, MPH6; Lentine, Krista L. MD, PhD7; Schaffer, Randolph L. MD8; Cameron, Andrew M. MD, PhD1; Segev, Dorry L. MD, PhD1,5

Author Information
doi: 10.1097/TP.0000000000002243

Abstract

Social media platforms are technology tools that have the ability to foster digital opportunities bringing individuals together for networking and communication. The types used most frequently continue to evolve, but among the more common examples today are blogs, such as www.kevinmd.com, social networking sites (eg, Facebook, LinkedIn), microblogs (eg, Twitter, Tumblr), and photo/video sharing sites (eg, YouTube, Instagram).1 One of the reasons for their popularity is that communication through social media can reach its target audience immediately, without the lag time associated with traditional print media.2 As primary communication methods, social media platforms are increasingly becoming integrated into the daily routine of people’s personal activities and professional practice. Pew Internet Research reports that three quarters of Facebook users and half of Instagram users use each site daily.3 Although the average person in the United States engages in social media use for more than 6 hours per week,4 Barreto and Whitehair5 reported that healthcare providers spend 11 to 13 hours per week on medical professional networking sites. In the workplace, users have reported using social media to take a mental break, connect with family and friends at work, make or support professional connections, obtain information to solve problems at work, and build personal relationships with coworkers.6 Social media’s greatest societal contribution is that they have helped to expand and enhance access to knowledge and revolutionized educational approaches to learning across professions.

Among healthcare professionals and organizations, including those in surgical specialties, social media are increasingly being used in a professional capacity to disseminate research findings, promote scientific and medical conferences, and enhance communication with colleagues and patients.7-13 In the field of organ transplantation, social media platforms are being used to increase public awareness of organ donation, help transplant candidates find potential living donors, and disseminate research impacting clinical practice.14-20 Surgeons are no different than the general population in adopting new technologies such as social media for personal use.21 However, surgeons have embraced this technology with trepidation, needing to carefully consider the impact of social media content on the public.21 Hesitancy to engage may come at a risk. The proliferation of surgical subspecialties, such as organ transplantation, and practice settings worldwide, has created a widening gap in access to professional development opportunities for many surgeons and surgical trainees.22 A surgeon today may be the only one to perform certain procedures in a given geographic region and therefore innovative ideas, techniques, and best practices can only be learned by attending professional conferences, which may be cost prohibitive, or via distance learning opportunities, such as social media. Research has shown that higher levels of peer interaction are associated with higher pass rates and performance on measures of knowledge and clinical competence on the American Board of Surgeons Maintenance of Certification examination.23

In addition to continuing education and professional networking opportunities, transplant healthcare professionals have shown effective and successful utilization of social media to promote deceased donation and to expand living donor transplantation.14,16 The widespread use of social media among transplant professionals is unknown at this time. Given the rapid advancements in surgical fields, known resource limitations, and availability of technological aides that can facilitate achievement of desired health outcomes, the authors believe that exploration of social media practices can augment the field of organ transplantation. To understand the attitudes toward, perceptions of, and use of social media by transplant professionals, we surveyed members of the American Society of Transplant Surgeons (ASTS).

MATERIALS AND METHODS

Study Population and Survey Distribution

We electronically distributed surveys to all ASTS members, including both US and non-US ASTS members, and collected responses between January 10, 2017, and March 7, 2017. We contacted nonrespondents up to 3 times via email. The Johns Hopkins Institutional Review Board approved this study (IRB00124239), and informed consent to participate was presumed upon starting the survey.

Survey Design

The survey was designed to understand attitudes, perceptions, and use of social media by ASTS members. We asked participants to provide their personal opinions, and not the opinion of their transplant center. The 17-item Web-based survey was hosted by Qualtrics (Provo, UT) and was available on mobile phones and desktop computers. Three transplant surgeons, an expert in qualitative research, 6 surgical residents, a research assistant, a research data analyst, and a statistician pilot-tested the survey to enhance face validity before distribution.

Survey questions included specialty in transplantation, current position, ASTS membership category (regular, associate, candidate, trainee, or other), personal use of social media, transplant center social media outreach, attitudes about transplant center use of social media, perceptions of the influence of social media in the field of organ transplantation, and attitudes about screening for living donors identified by their potential recipient on social media (SDC, Materials and Methods,http://links.lww.com/TP/B568). Participants who indicated that there should be additional screening for living donors identified by social media were prompted to explain what that screening should entail. Open-ended questions solicited general thoughts about social media and transplantation. Clinical practice demographics were also assessed including: center kidney transplant volume in 2015, academic medical center versus private practice, and United Network for Organ Sharing (UNOS) region.

Statistical Analyses

We compared survey responses by respondent characteristics as well as by their reported personal and programmatic social media use using the χ2 test and Fisher exact tests. All analyses were performed using Stata 14.2/MP for Linux (College Station, TX). We used a 2-sided α of 0.05 to indicate a statistically significant difference. Two coders independently analyzed responses to open-ended questions using NVivo (QSR International). Thematic codes were inductively identified based on the interview transcripts and were organized into themes and subthemes. The coders reconciled differences in the application of codes through discussion until reaching consensus.24

RESULTS

Study Population

Of 1257 ASTS members who were contacted, 299 individuals responded to the survey. Transplant surgery was the specialty of 85% of respondents, 68% were in faculty positions, 57% were between the ages of 40 and 59 years, and 91% worked in academic medical centers (Table 1). There were respondents from each of the 11 UNOS regions (Table 2).

TABLE 1.
TABLE 1.:
Study population
TABLE 2.
TABLE 2.:
Transplant center characteristics

Personal Use of Social Media

Respondents used social media to communicate and interact with: friends and family (76%), other transplant professionals (58%), other surgeons (57%), transplant recipients (21%), living organ donors (16%), and transplant waitlist patients (15%) (Table 3). Most (83%) reported using social media for at least 1 purpose.

TABLE 3.
TABLE 3.:
Social media use among respondents and transplant centers

Respondent-reported Transplant Center Use of Social Media

Most (50.1%) respondents answered the question on frequency of “transplant program” social media outreach. Thirty-nine percent reported no social media outreach by their transplant center, and 15% reported daily social media use and outreach by their transplant center (Table 3). Transplant centers with an annual kidney transplant volume higher than 100 were more likely to use social media than centers with a lower kidney transplant volume (P < 0.01).

Attitudes About Transplant Center Use of Social Media

Most respondents agreed that transplant centers should use social media to: increase awareness about deceased donation (96%), increase living organ donation (91%), share information with potential transplant candidates and transplant recipients (61%), share information with living donors (60%), share information with potential living donors (60%), and to advertise their transplant program (56%). However, 42% of respondents disagreed with using social media to match transplant candidates with potential living donors (Table 4).

TABLE 4.
TABLE 4.:
Attitudes about social media use in transplantation

Younger respondents and those with 10 or fewer years in the field of transplantation were more likely to agree with social media advertisement for transplant centers (P < 0.001 and P = 0.01, respectively) (Table 5). Those with 10 or fewer years in the field of transplantation were more likely to agree with the use of social media to facilitate matching of recipients and potential living donors (P = 0.02) than those with more time working in the field (Table 5). Those with more than 30 years working in the field were less likely to agree with the use of social media to increase awareness about deceased organ donation than those with less professional transplant experience (P = 0.04, Table 5). There were no statistically significant differences in responses by respondent sex or reported transplant center social media use (Appendix 1).

TABLE 5.
TABLE 5.:
Attitudes about transplant center social media use by respondent characteristics

Perceptions of Social Media Influence in Transplantation

Most respondents perceived social media to be influential in: increasing awareness about deceased organ donation (89%), increasing living donation (82%), and advertising for transplant centers (70%). Social media were noted to be of influence when sharing information with living donors (69%) and transplant recipients (67%). Respondents were divided about whether or not social media can actually facilitate matching of potential transplant recipients with potential living donors; 55% said that social media can facilitate the matching of transplant candidates with potential living donors (Table 6).

TABLE 6.
TABLE 6.:
Attitudes about social media influence by respondent characteristic

The belief that social media could be influential to increase living organ donation was associated with younger age of respondents (P = 0.02) and fewer years of experience in the transplant field (P = 0.03) (Table 6). More frequent reported social media use by the participant’s transplant center was associated with more favorable views on sharing information with transplant recipients (P < 0.01), increasing awareness about deceased organ donation (P < 0.01), and advertising for transplant center (P < 0.01) (Table 6). There were no statistically significant differences by respondent position, sex, or ASTS membership category (Appendix 2).

Attitudes About Living Donor Identification Through Social Media

When asked about special screening during the evaluation of potential living donors identified by their potential recipient through social media, 59% believed that these donor candidates should be evaluated in the same way as any other candidate. Of the 41% who reported that special screening should be required for living donors identified through social media, additional psychological or psychiatric screening, social work follow-up, and additional testing to screen for coercion, pressure, or undue influence was suggested. Two respondents stated that transplant centers should initiate special screening to ensure that the informed consent process includes disclosing the risks of social media use and the assessment of coercion through social media. One respondent noted, “It is a challenge to use social media to find a living donor. We get many calls from potential donors that don’t understand that donating a kidney is a time consuming and life-long decision.” Another respondent said, “It’s [social media] a great place for the transplant community to raise awareness and provide information. The use of social media to identify donors should be left up to the recipient not the transplant program” (Table 7).

TABLE 7.
TABLE 7.:
Qualitative themes related to living donor identification through social media (n = 71)

Other Thoughts About Social Media and Transplantation

Responses to the open-ended question about social media and transplantation included themes of information and education, misinformation and fake news, communication with patients, methods of identifying donors, and use of social media in a professional capacity by the transplant community. Seventeen respondents recognized social media as a good medium for education. For example, 1 respondent noted: “I think it is an underused opportunity to improve information and interconnectivity.” Concerns about misinformation were mentioned by 5 respondents: for example, “It [social media] will need to be tirelessly monitored for misinformation.” Another respondent said, “I suspect there is “fake news” about transplantation in social media.” One respondent noted, “Just like anything with social media/internet, there is a lot of false information and formal education often has to “undo” much of the information obtained via social media. I don’t think it is wise for transplant professionals to personally interact with patients on social media, the line between clinician and patient can become blurred, setting up a potentially bad situation in terms of medical advice, etc.” To contrast this opinion, another respondent said, “The benefits will likely outweigh the difficulties in managing information. Branding of transplant programs with validation of source will need some work to attain reliability and trust of information given.”

Four respondents had concerns about public relations stemming from social media use. As 1 respondent noted, “Would not want to somehow hurt the public’s perception of donation by unmonitored use of social media. Although, as long as we are thoughtful about it, I think this can be avoided with relative ease.”

Eleven respondents noted concerns about privacy, particularly, about the potential difficulty for the transplant community to “police” social media to ensure privacy rules are not violated. There were concerns raised by some respondents about social media interactions with patients or to provide medical advice. For example, 1 respondent noted that social media is “good for general information. Everything else should be on a one-to-one confidential basis.” Another respondent shared that social media is “good for promoting organ donation and general principles/strategies; inappropriate for sharing patient-specific medical information as it omits context/discussion.” The risk of abuse and coercion was a concern with social media being used to facilitate matching of potential donors and recipients, and social media’s utility for professional networking was varied among those commenting on this aspect.

DISCUSSION

In this survey study of ASTS members, we assessed attitudes of, perceptions towards, and use of social media in transplantation. Most respondents reported that their transplant center never performs social media outreach, but those who report weekly or monthly social media outreach had a higher kidney transplant volume. Respondents used social media for social interaction, as well as to interact with colleagues, patients, and donors. Member characteristics influenced opinions on the role and clinical usefulness of social media, and buy-in from transplant centers may influence clinical perceptions of social media. Overall, this survey demonstrates that the field is deeply divided, often along generational lines, about the role that social media technology plays in organ transplantation.

The professional communities used most by healthcare professionals are Facebook (86%) and Medscape Physician Connect (52%), followed by Sermo (44%), LinkedIn (42%), YouTube (40%), Blogging (25%), and Twitter (20%).5 Among surgical disciplines, transplantation is not alone in its increasing use of social media. A study of plastic surgeons found that 47% used social media personally while 28% used social media professionally, which is less than reported by ASTS members.25 Another study of plastic surgeons reporting on reasons for using social media included: the beliefs that incorporation of social media into medical practice is inevitable (57%), that they are an effective marketing tool (52%), and that they provide a forum for patient education (49%).26 Vardanian et al26 also found that surgeons with a primarily aesthetic surgery practice were more likely to use social media, with most respondents (65%) stating that social media had no effect on their practice, whereas 34% reported a positive impact and only 1.5% reported a negative impact.

In an international cohort of 759 hernia specialists from 57 countries, 44% engaged with a social media platform: 39 (5%) had Twitter accounts, 189 (25%) had ResearchGate accounts, and 265 (35%) had LinkedIn accounts.27 For orthopedic surgeons and their practices, general-purpose online social networks, such as Facebook and Twitter, are felt to serve as convenient platforms for marketing, providing patient education, and generating referrals.28 As the use of social media within the field of surgery has expanded, several medical and surgical organizations have published guidelines to promote safe, ethical, and appropriate online behavior by providers. In review of 7 such guidelines, Logghe et al29 recommend that even surgeons who are not interested in extensive social media involvement should be aware of its prominent role within surgical practice and take action to exercise control over their online presence.

The rise of social media use within surgery30 coupled with the rise of the patient-centered care movement, where patient values and perceptions are central to care quality and delivery, has led transplant centers to develop ways to help patients leverage social media to find a living donor and to promote access to living donor education in culturally sensitive ways for minority populations.14,31 To this end, most ASTS members responding to the survey agreed that social media should be used to increase and improve living organ donation. More than half (55%) agreed that using social media to facilitate the matching of recipients with potential living donors is influential, although 41% of respondents believed that additional screening should be required for donor candidates identified through social media. A working group instituted by the Ethical, Legal, and Psychosocial Aspects of Transplantation section of the European Society for Organ Transplantation similarly recommended that screening procedures be reviewed to ensure donor candidates identified through public solicitation are handled responsibly.32 Henderson et al33 previously recommended that although the current psychosocial evaluation process in the United States already investigates the potential financial motivation to donate, a new assessment question should be tailored to donors identified via social media.

Respondents overwhelmingly (96%) agreed that social media is influential for deceased organ donation education and awareness, which is expected given the mass media and social media campaigns promoting deceased organ donation for optimizing enrollment in organ donor registries. Promotion and awareness about organ donation encompasses multifaceted communication tools and provide scripted messages communicated to the public through audiovisual entertainment media, print materials and interpersonal interaction at the offices of departments of motor vehicles, and now include social media and other digital platforms.18,34 Apple and Donate Life America launched the registerme.org platform within the iOS Apple Health Kit in the fall of 2016 allowing iPhone users to register their donation decision to the national registry. Social media giants Facebook, Tinder, and Twitter have agreed to develop new tools and public advocacy campaigns to encourage organ donation and to make it easier for people to sign up to be deceased donors with the goal of achieving a million new organ donor registrations and social declarations by fall 2017.35

Our study was limited by a low response rate of 24%. Furthermore, ASTS members with strong views in support of social media use in organ transplantation may have been more likely to respond to our survey, whereas those who are unsupportive may have been less likely to respond. However, we did capture multiple perspectives of individuals from various ASTS membership groups, geographic locations, numbers of years worked in transplant, and age groups. Inferences about transplant center social media practices were limited to those expressed by the respondents who may not be fully aware of these practices; only 50% of respondents answered the survey question regarding their center’s use of social media, suggesting that many respondents may not be informed about social media practices at their centers. Despite this, there were no significant differences in perspectives on social media in transplantation between respondents who did and did not report their center’s use of social media.

CONCLUSIONS

This national survey of ASTS members found that most transplant professionals use social media in a personal or professional capacity to interact with family, friends, and colleagues; however, fewer use social media to communicate with patients or potential living organ donors. Most respondents reported that social media is influential in increasing awareness of deceased organ donation and increasing living organ donation, yet most reported that their transplant center does not do social media outreach. Social media participation may offer transplant surgeons and other transplant professionals the opportunity to leverage social media to deliver high-quality information to patients and potential donors. In the coming years, it will be important to identify strategies for transplant professionals to effectively and ethically leverage social media to disseminate research findings impacting clinical practice, enhance communication between and among patients and providers, promote living organ donation and transplantation, and provide reliable information to patients.

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