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Table of Contents
REVIEW ARTICLE
Year : 2021  |  Volume : 15  |  Issue : 2  |  Page : 139-146

Social media and organ donation - A narrative review


1 Department of Renal Medicine, The Alfred Hospital, Monash University Central Clinical School, Melbourne, Victoria, Australia; International Society of Nephrology - @ISNEducation Social Media Team
2 International Society of Nephrology - @ISNEducation Social Media Team; Department of Nephrology, Saveetha Medical College and Hospital, Chennai, Tamil Nadu, India
3 International Society of Nephrology - @ISNEducation Social Media Team; Department of Nephrology, Kocaeli University Hospital, Kocaeli, Turkey
4 International Society of Nephrology - @ISNEducation Social Media Team; Department of Nephrology, Dharma Kidney Care and Apollo Hospitals, Bengaluru, Karnataka, India
5 International Society of Nephrology - @ISNEducation Social Media Team; OneLife Kidney Clinic & Queen's NRI Hospital, Visakhapatnam, Andhra Pradesh, India
6 International Society of Nephrology - @ISNEducation Social Media Team; Department of Nephrology, Kidney Associates Pvt Ltd, Mumbai, Maharashtra, India
7 International Society of Nephrology - @ISNEducation Social Media Team; Department of Nephrology, Sagar Hospital, Bengaluru, Karnataka, India

Date of Submission05-Nov-2020
Date of Acceptance01-Feb-2021
Date of Web Publication30-Jun-2021

Correspondence Address:
Dr. Arvind Conjeevaram
Sagar Hospital, Bengaluru, Karnataka, India; @ISNeducation Social Media Team

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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijot.ijot_138_20

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  Abstract 

Increasing demand for organ transplantation which is often the lifesaving treatment for organ failure and a shortage of organs is a crisis prevalent in many countries. Proactive engagement of the society by improving awareness about organ donation is perceived to be the key to address the problem of organ shortage. In the current digital era, social media (SoMe) organ donation campaigns are one of the most practical and effective ways to disseminate information and promote collaboration among participants. Many governmental and nongovernmental organizations and social activists are utilizing popular SoMe platforms such as Facebook, Twitter, YouTube, and Instagram to promote organ donation awareness. Although such SoMe campaigns are impactful and open unique possibilities to address organ shortage, one should also be aware of the challenges of maintaining confidentiality, the potential for misuse, misinformation, and negative framing. In this narrative review, we review the use of SoMe to promote organ donation including its benefits, pitfalls, and attempt to list some recommendations.

Keywords: Altruistic donor, awareness, deceased donor, living donor, organ donation, recommendations, social media, transplantation


How to cite this article:
Basu G, Nair S, Bek SG, Dheerendra P, Penmatsa KR, Balasubramanian K, Shingada A, Conjeevaram A. Social media and organ donation - A narrative review. Indian J Transplant 2021;15:139-46

How to cite this URL:
Basu G, Nair S, Bek SG, Dheerendra P, Penmatsa KR, Balasubramanian K, Shingada A, Conjeevaram A. Social media and organ donation - A narrative review. Indian J Transplant [serial online] 2021 [cited 2021 Jul 24];15:139-46. Available from: https://www.ijtonline.in/text.asp?2021/15/2/139/319881


  Introduction Top


The global challenge of insufficient donor pool in the face of increasing organ need, is more pronounced in the low and low-middle income countries, with a below global average rate of transplant activity.[1],[2],[3],[4] One of the reasons for the widening gap between donation and organ demand is a relative lack of awareness of organ donation.[5] Using media to promote awareness of organ donation has been important in the attempt to bridge this gap. With the advent of the internet and mobile telephony, awareness campaigns have expanded from print and mainstream media (television, radio) to social media (SoMe) platforms. The use of SoMe platforms has been effective[6],[7],[8] and impactful in many instances[9],[10] but has delivered mixed results[11] or posed ethical issues in some cases.[10],[12] We aim to review the role of SoMe in organ donation and propose some recommendations for its optimal use.


  Social Media Campaigns in Organ Donation and Transplantation Top


SoMe platforms for social-networking (Facebook and LinkedIn), micro-blogging (Twitter and Tumblr), and media-sharing (Instagram and YouTube) serve to reach out not only to friends and family but also a wider section of the community including committed followers, rapidly, and effectively. They deliver the message at a more personal level by utilizing networks of connected individuals and communities defined by common interests, traits, and beliefs.

SoMe has been used in a limited way to popularize organ donation by the government, nongovernmental organizations (NGO), transplant hospitals, health providers,[6] patients and caregivers.[10],[13] For example, OrganDonor.gov in the USA and MOHAN Foundation in India utilize Facebook pages that disseminate content on organ donation. On other platforms such as Twitter, individuals and organizations connect, converse, and share short pieces of information with links and media on organ donation with the added advantage of the ability to characterize conversations by volume, hashtag terms, and sentiments.[14],[15]

Media sharing platforms such as YouTube and Instagram provide channels to disburse appealing visual content on transplantation. For example, the NHS in the UK runs a YouTube channel that shares information and stories relating to organ donation. A review of hashtags accompanying the pictures on Instagram shows that #organdonation accounts for 180,885 posts while #organdonationawareness accounted for 21107 posts and #organdonationsaveslives for 17140 posts.

Comparison between traditional mass media and social media campaigns

Conventionally, organ donation campaigns have relied upon, mass media (television, radio), community outreach campaigns that use unidirectional, nondirected messaging, hoping to reach anyone/someone in the audience. It often involves health professionals or media personnel providing a general message in a nontargeted and noninteractive mode.

SoMe can help deliver content designed specifically to the community demographics, preferences, and social interests, with optimally relatable and highly shareable material with precision, and spread it through established relatable social networks. SoMe campaigns through Facebook, YouTube, and Twitter can reach wider groups of audiences and have the potential to facilitate engagement by synchronous communication and collaboration among numerous users. As an estimate, it would take 38 years for radio to disseminate a message to 50 million people, 13 years for television, 4 years for the internet, 3 years for the iPod, but <3 months for Facebook.[16],[17]

The advantage of SoMe in this realm is based on the fact that social identification leads to competition based pro-social behaviors[18] and successful interventions target behavior in a publicly visible manner.[19] Since the SoMe communities are connected by common interests, beliefs and factors, a network-based intervention approach for organ donation can increase target audience engagement better than traditional community-based approaches.[20] The effectiveness of SoMe campaigns can be improved by engaging or utilizing specific highly connected individuals (influencers) who in turn act as social reinforcers for the community of followers,[21] thereby creating organic sustainability of the messaging through interactions (e.g., like and share).[22] Influencers help actively disseminate the targeted content among their social network and contribute to spread the message to a wider audience who may be missed otherwise.

On SoMe platforms, videos, stories, interviews from experts, endorsements from popular individuals or groups as well as shared stories of members of the community positively frame organ donation and seek to counter misinformation. The authenticity of real-world experience shared through SoMe likely has greater impact on personal perception. A larger audience in conjunction with tailored relatable content provides an ideal platform to effectively engage a target population while potentiating a shift toward positive attitudes regarding organ donation.

With real-time feedback in SoMe, analysis of both the impact and response to the content becomes easier than with traditional media. Beyond the number of impressions, clicks, likes and page views, monitoring tools allow organizations to identify audience attitudes toward organ donation. Platforms such as Twitter help real-time social sensing as it allows for data collection of not only the user characteristics but also the overall sentiment of the audience based on users' interactions and public profile. Response analysis helps identify information gaps and adjust messages accordingly for a successful and effective campaign.[23]

SoMe interventions for organ donation also have the advantage of flexibility. There are no rigid frameworks for the type of content and every content has a relevant platform. Campaigns on Facebook, for example, use short motivational videos associated with testimonials, current facts, and statistics about organ donation, as well as a link to the organ donation registration website. Besides, the freedom and ease of content production and delivery (uploading) that is available at the fingertips, sidestepping the rigid protocols of traditional media is an additional advantage.

The differences between traditional and SoMe campaigns are depicted in [Figure 1].
Figure 1: Differences between traditional and social media

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Optimal integration of SoMe campaigns with traditional campaigns adds value to the campaign. Hitt et al.[24] found that Facebook advertisement and promotion activities provided additional value to the traditional campaign promoting organ donation in Michigan. More recently, in India, the synergy between traditional media and SoMe to promote the message of organ donation was demonstrated when Facebook, Instagram, and Twitter were used to successfully advertise the message of organ donation when Dr. Sunil Shroff of MOHAN Foundation appeared as a guest contestant on the popular television quiz show Kaun Banega Crorepati hosted by actor Amitabh Bachchan. SoMe platforms not only amplified the message but also sustained the conversations on organ donation, reaching beyond mainstream media audience, and vice versa.[25]

SoMe engagement is participatory and reciprocal, lending itself to conversations and interactions between and among organizations and their diverse audiences with real-time feedback thus adding value to traditional campaigns.

Content and reach of social media campaigns

As media and internet have been the main source of information on organ donation for the masses,[26],[27] a variety of innovative SoMe campaigns have been used to promote organ donation across the globe both by groups and individuals effectively. While the use of traditional media (television, radio, print) have been shown to increase the organ donation rate by 4%–7% internationally,[28],[29] targeted SoMe campaigns have increased organ registrations by 21 times.[8],[30]

On a platform like Twitter, the content on organ donation is largely driven by organizations and individuals discussing donation stories, sharing news, and searching for organ donors. Furthermore, transplant programs, hospitals, and professionals share, discuss, collaborate, and disseminate information aimed at both professionals and the wider community.[6] An American Society of Transplant Surgeons survey of transplant surgeons,[12] found members using SoMe to connect and communicate with other transplant surgeons (59%), transplant professionals (57%), recipients (21%), living donors (16%), and waitlisted candidates (15%). Such diverse interactivity can be utilized for spreading the message of organ donation.

The Centre for Organ Recovery and Education in the US launched the Just One campaign using the hashtag #justone on Facebook, Twitter and Instagram to spread awareness and recruit new organ donors, by encouraging users to tag one other person to register for organ donation each day,[31] while emphasizing on the impact that one additional donor registration can save up to eight lives.

“The Facebook Effect” on improving organ donor registry rates was documented by Cameron et al.[30] in a study that detailed the impact of the Organ donation campaign by Johns Hopkins' transplant team, along with the Living Legacy Foundation of Baltimore and DonateLife America in 2012. It directed users who selected “organ donor” on their profile to the appropriate state registry website and indicated their pledged status prominently on their timeline, while those unsure were provided with links to promotional material organ donation. As a result, there were 39,818 new registrations (32,958 more than usual) over 13 days-about 63.5 times higher than the traditional campaign by the Department of Motor Vehicles.[30]

The potential for targeted intervention through SoMe was demonstrated by the Infórmate campaign to boost living donor kidney transplantation (LDKT) among Hispanics in the US. The Northwestern University with the National Kidney Foundation of Illinois developed a website culturally targeted to Hispanics promoting LDKT and shared the campaign links on SoMe. Facebook advertisements of the campaign reached 91,864 users with 2267 clicks, while Twitter impressions reached 31,263 individuals, with 108 clicks to Infórmate.[32]

Social networking interventions (SNI) on multiple SoMe platforms are an affordable and effective way to rapidly engaging large populations to spread awareness on organ donation.[20] In a study from the US, increase in digital markers of public organ donation awareness on Twitter was associated with increased donor registration, such that for every 10 organ-related tweets, there was 3.20% increase in the organ donor registrations at the city level. Besides, delivering optimized SNI on Facebook effectively reached 1 million users, and the use of optimization significantly increased the click-through rate.

Few randomized trials have evaluated the effectiveness of SoMe reach in increasing organ donation rates. In a Randomized Controlled Trial[33] comparing Web-Based Video Interventions to enhance university student willingness to donate organs, it was found that students who watched the live-action video on YouTube were more willing to visit their electronic donor registry to register as organ donors. Beyond the clicks and registrations, the direct impact of SoMe strategies on actual transplant numbers remains unclear.


  The Indian Context Top


India has a rapidly growing digital population with over 680 million active SoMe users. As of 2020, India has over 300 million Facebook users, the highest across the globe.[34] Organ donation awareness in India has varied geographically and across socio-economic strata.[35] Despite relatively high awareness,[36],[37] conversion to an increase in organ donation rate has been poor. The early use of SoMe focused on organ donation awareness.[11]

NGOs and nonprofit organizations, media houses, health-care organizations, and the government have actively used SoMe to promote organ donation. For example, Mohan Foundation uses Facebook and Twitter and engages SoMe professionals to train its staff on spreading the word on organ donation and deceased donor transplantation.[38] Others such as Apex Kidney Foundation, Gift Your Organ, make use of educational videos for promoting organ donation. The Jaslok Hospital along with Dentsu Webchutney held an innovative Instagram campaign on National organ Donation Day in 2018, that questioned the “slacktivism” by using a bot to delete a liked post and repost it thereby nudging people to move beyond “likes” to a more active role in spreading the word on organ donation.[39]

At an individual level, many patients, friends, and relatives use SoMe for their cause such as raising funds, soliciting altruistic donors or sharing transplant stories, thereby directly or indirectly promoting organ donation. Thousands of well-meaning donors have crowdfunded organ transplants through fundraising campaigns that are being increasingly popular.[40] Individuals have initiated campaigns to promote awareness and changes in organ donation policies. Popular organizations and individual influencers have collaborated or supported SoMe campaigns to amplify the effect.[41],[42] Virtual SoMe campaigns connected to offline events such as marathons, walkathons, etc., leverage online followers to come together in the real world, building a sense of community and common goal,[41],[43] and then further reinforced the message again on SoMe to raise awareness.

However, in a vast country like India, with regional and socioeconomic variations in information access, SoMe may not be as influential in some sections. In a study conducted in Nagpur,[44] the main source of information on organ donation was the doctor and the hospital brochures (32%), followed by television (12.4%), and newspaper (24.8%), while internet counted for a mere 4%. Another survey concurred with this finding.[45] In rural South India,[46] 83% of the respondents learnt about organ donation and its benefits from the traditional media, such as television and newspapers. Nevertheless, the potential for reach via SoMe was demonstrated by a tweet by the Prime Minister of India on his message on organ donation, that was retweeted 1200 times [Figure 2], following which there was a demonstrable increase in traffic to the website of National Organ and Tissue Transplantation Organization (NOTTO) and also to its helpline[47] A study from Puducherry[48] showed that there has been an increase in awareness in the two decades, some of which is attributable to SoMe campaigns, with a concomitant increase in the donation rates.
Figure 2: Tweet on Mann Ki Baat episode promoting organ transplantation by PM Narendra Modi

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Unfortunately, there has however been no research study in India evaluating the effectiveness of specific SoMe interventions in increasing organ donation.

Problems of SoMe campaigns on organ donation promotion and some solutions

SoMe engagement on organ donation poses a few challenges. The boon of flexibility and interaction is a bane as well, with significant risks of uncontrolled narrative, creeping misrepresentation, conversational hijack, and online incivility. Establishing SoMe policies and processes, moderation and regulation of content and comments help manage such risks and ensure appropriate content delivered to users.[23] Organizations must commit time and effort in moderating, responding, and modifying the narrative as well as strategies based on feedback and engagement metrics to maintain consistent, positive, and coordinated engagement.

Campaigns on SoMe could end up being fickle and can fizzle out with the next sweeping attraction, if not carefully planned and executed. The brief paroxysms of awareness may indicate only virtue signaling and may not translate into concrete offline results in the era of limited online attention spans. A sustained well-planned psychosocially engineered campaign can increase awareness and engage the public, and hopefully translate into an actual increase in organ donations.[49]

The potential for widespread misinformation in SoMe is another threat. For example, some YouTube channels or content promote questionable experimental therapies in end-stage organ disease and spread misleading information on organ donation and transplantation[50] with negative framing and audience comments expectedly mirror the misinformation. An effective way to combat negative and misleading information is by ensuring more and more legitimate professional societies and governmental programs utilize SoMe to engage viewers effectively and promote reliable information and counter misleading content. In general, health-care content shared on SoMe platforms from governmental organizations and professional societies were considered of good quality, trustworthy and largely positively framing organ donation, and transplantation.[51]

SoMe campaigns related to organ donation are used not only to raise awareness but also solicit organs, especially from living donors. This could either be case-based campaigns organized by institutions, especially overseas, targeting non directed altruistic donations or those by individuals targeting directed living donors.[52] The former strategy may not contradict existing organ allocation principles and complies with the Declaration of Istanbul[53] for ethical allocation of organs if altruism is upheld, and commercialization is absent. Such strategies could be directed at deceased donation or altruistic living donations that could be integrated into paired kidney exchange, potentially sparking off a chain of donations.

However, the latter strategy of soliciting directed living donors, increasingly being used on SoMe sites like Facebook or “organ-matching” websites for a fee, may privilege access to the savvy and affluent. Apart from possibly propagating exploitation of the economically disadvantaged as donors, mediagenic web pages, appealing stories [Figure 3] involving highly visible celebrities [Figure 4] confer an undue advantage and likely promote a “beauty contest” approach[54] where potential donors choose recipients based on their personal biases built on the peripheral details of the recipient, undermining the principles of equity. While such a strategy, especially in the absence of commercialization, is permitted in countries such as the USA, the UK, and the Netherlands, it remains illegal in several European nations such as France, Germany, and Greece. In India,[55] such strategies will more than likely serve to widen the existing disparities in access to organs. The Human and Tissue Authority of the UK has published guidelines for potential patients seeking to publicly solicit organs.[56] The European Society for Organ Transplantation has raised concerns regarding the negative effects of public solicitation of organs on the perception of the transplant program and potential risks for an increase in organ trade.[57] Professional societies should participate in policymaking and developing guidelines for SoMe use in transplantation, aligned with the local laws.
Figure 3: An appealing image in web page soliciting altruistic organ donor

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Figure 4: Example of a social media story on organ donation involving a well-known celebrity

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The openness of SoMe can be a double-edged sword as social networks can be abused for organ trade, initiated by prospective recipients, needy donors and often by “middle-men” for illegal gains.[58] The lack of regulation of online content has led to SoMe platforms being used to blatantly promote illegal transplant activity [Figure 5]. This could be seen to preferentially empower the rich and influential segments of the society and negatively frame the organ transplantation and potentially unhinge the principles of ethical and equitable procurement and allocation that should be cornerstones of every organ transplant program. Policymakers should aim to address lacunae in existing laws to strengthen the legal framework to counter the negative use of SoMe for organ donation. It is important to spread awareness of the harms of commercial organ trade and counter it, not only by legal enforcement but also by active promotion of positive awareness and guidance to legal pathways to transplantation. In India, as per the Transplantation of Human Organs Act, donations between unrelated individuals are discouraged and have to be specifically approved by the Authorization Committee after establishing that the donor and recipient have “affection and attachment” through documentary evidence.[59] In an era when interactions on SoMe have led to virtual relationships that even culminate in marriages, SoMe based potential donor-recipient relationships present an additional challenge.
Figure 5: An example of Illegal use of social media in organ donation

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The use of SoMe could potentially threaten the privacy and confidentiality of recipients and donor, leading to unintended consequences. For example, organ donors or their families attempting to contact or stalk recipients (or vice versa) following anonymous donations– a situation potentially fraught with emotional and psychological stress.[60] In one reported instance, following the leak of clinical details of a road traffic accident victim via SoMe, the hospital's transplant team was unable to broach the topic of organ donation in an “extremely difficult” interview.[61] Active SoMe presence guided by clear SoMe policy by transplant institutions could prevent mishaps, misinformation, and possible misuse of their credibility for illegal organ trade. Besides, institutions involved in transplantation must provide reliable information on their programs and access through SoMe to reach the wider community as well as curb misinformation and illegal organ trade.

Fruitful translation of SoMe-based organ donation campaigns to incremental transplant activity hinges also on transparent integration with state or national organ donor registries. Universal health database is a distant dream in India. However, there is a considerable attempt to at least gather transplant activity data through central organizations regulating transplantation. In India, the NOTTO functions as the apex center for coordination, procurement networking, organ distribution and registry of transplantation[62] with five Regional Organ and Tissue Transplantation Organization and several autonomous State-based Organ and Tissue Transplantation Organization authorities. These organizations, also involved in activities for organ donation promotion, should integrate their promotional activities into SoMe and help spread awareness as well as limit disinformation by active participation.

Several best practice recommendations for strengthening SoMe use in the promotion of organ donation from existing literature as well as those proposed by the authors are collated and presented in [Table 1].
Table 1: Best practice recommendations for social media use in organ donation

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  Conclusion Top


SoMe is a useful tool to spread organ donation awareness. The ability to target audience with specifically designed content and the quality of interactions are its strengths over traditional media. Positive and concerted use of SoMe for organ donation is still in its infancy in India. There are several potential pitfalls to using SoMe for this purpose that need to be addressed with the active participation of stakeholders, strengthening legal frameworks and regulation, while maintaining the principles of privacy, confidentiality, decency, and equity and focus on limiting the disparities in access. We also hope that the suggested best practice guidelines are useful in advancing this progress responsibly.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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