Promoting organ donation on the Twitter platform: an exploratory analysis in Ecuador

Headnote

Abstract: There is a growing discrepancy between the number of organ donors and potential recipients in Ecuador. It is estimated that more than 800 patients are on the waiting list for organs. Likewise, the population does not recognize the importance and benefits of donating, although, since 2011, each Ecuadorian is a donor. This exploratory study is intended to address organ donation as a topic for debate within social networks. For this purpose, Twitter was selected as the platform, primarily because it is actively and internationally related to the political. In Ecuador, there is a direct relationship in politics between visibility on Twitter and acceptance in the polls. Data referring to organ donation were not obtained in this study. It demonstrates that the debate around the subject does not have higher dynamics on Twitter.

Keywords: organ donation; Twitter; Ecuador.

1.Introduction

Over the past decades, organ transplantation has become life-saving therapy for many common end-stage organ diseases (GODT, 2016; OPTN, 2020; UNOS, 2017). As a result, more than 800 Ecuadorians await organ transplantation (INDOT, 2020). There is a significant divergence between the organ donation and transplant system in Ecuador. However, there are no significant studies on whether the Ecuadorian population recognizes the importance and benefits of organ donation. Despite this, since 2011, all Ecuadorians and legal residents are donors by default. The only exceptions are those who deselect themselves (Ley Orgánica de Donación y Trasplante de Órganos, Tejidos y Células, 2011), and there is no statistical evidence regarding the number of patients who die while remaining on the waiting list. It is also evident that the overall mortality of patients on the waiting list is significantly higher than that of transplanted patients (Ojo et al., 2001).

In addition, experts say that internationally there is a large discrepancy between the number of people who claim that they support organ donation theoretically and the number of people who register as donors. In the United Kingdom, for example, more than 90 percent of people say they support donation. However, less than a third are registered donors (Wen, 2014). The most common hypotheses in the literature include mistrust in the medical field, lack of understanding about brain death, education, and religion as significant barriers to donation (dos Santos et al., 2019; Falomir-Pichastor et al., 2013; Haustein & Sellers, 2004; Irving et al., 2012; Jacoby & Jaccard, 2010; Kaur & Ajinkya, 2012; Morgan & Miller, 2002; Wakefield et al., 2010). Many people might donate if they knew the benefit of organ donation (Hyde & White, 2010). However, some still reject the concept of organ donation because they do not want their bodies dissected after death (Alam, 2007).

That is the reason some countries use social media communication to promote the importance of organ donation. Social media strategies have been used in hospitals that do transplants and in communities for several decades. Transplant programs increasingly use social networks to promote and advertise their programs and provide resources to the public about donations from living and deceased donors (America UaDL. Living Donor Transplant, 2016; Henderson et al., 2017; Kumar et al., 2016). That is the reason this study aims at exploring how organ donation is addressed on the Twitter platform in Ecuador.

2.Methodology

This exploratory study was intended to address the presence of organ donation as a topic for debate within social networks. For this purpose, Twitter was selected as a platform, in the first place, because this platform has been strongly related to the political world-wide, for example, in the Ecuadorian case, a direct relationship between visibility on Twitter and the acceptance at the polls of political characters (Marín-Gutiérrez et al., 2016). Secondly, Twitter was chosen for its representativeness in the country, being the second most used network in Ecuador (Ministerio de Telecomunicaciones y de la Sociedad de la Información, 2015); and third, because its Application Program Interface (API) allows connectivity with applications for data capture and analysis of social networks, specifically the Gephi program. Additionally, the nature of Twitter's microblog allows ideas placed there - textual ones - to be more easily understood when referring entirely to the main idea.

The analysis has initially been planned in three phases: the first aimed at identifying words and hashtags that were linked to organ donation, the second referring to the configuration of the application for capturing tweets related to the keyword, and the third, directly linked to the network analysis of the captured data, including the morphology and metrics of the network to be generated, tweets, users and hashtags with greater visibility, identification of organized movements (clusters). Due to the lack of data, the third phase was changed in an emerging way and consisted of capturing tweets in an area that contained the continental and island parts of Ecuador, details of this change are described below.

Regarding the first phase, an exploratory search was carried out within the social networks on the topic of "Donación de órganos." So that the expressions or hashtags that individually link to the topic are identified. Also, circumscribe the capture of data as close as possible to the Ecuadorian territory. It is because a previous experience, using as a keyword "Donación" showed too much ambiguity. It is being referred in a vast majority to the donation of blood, medicines, clothes and food, religious issues, activism for animal protection and rarely about organ donation, of which an example is shown below:

In the previous figure, the mustard nodes correspond to tweets, while the red nodes correspond to users. Thus, the user @americatoda sent a tweet with the text, "Indomita in many countries the culture of the organ donation does not exist. Allowing living people who need it is like giving light, the time God will say, but there is an opportunity to live. God helps create opportunities to other people through the donation," which also mentioned the accounts @vzla_indomita and @infobaeamerica. The @belenuriondo account retweets this text without the mention of the previous reports.

Furthermore, the preliminary capture revealing that there are few references to the donation of organs as such also announced the need to establish keywords that are effectively related to the country. Thus the official account of the Instituto Nacional de DonaciónyTrasplantesde Órganos,TejidosyCélulas-INDOT(@indotecuador)andseveral hashtags was selected from their latest publications, with priority to those expressing issues related to organ donation as well as Ecuador, including #Ecuadorpaisdonante, #indotacredita, #ecuadordonante, #indotecuador, #donateorganosesdarvida, #yodonovida, #yosoydonante, and #soydonanteymifamilialosabe. The last three are expressions whose use was also identified in other countries of the region (such as Chile and Colombia). However, they were added when observing in the previous exploration the possibility of having few results.

The program used, Gephi, is an open-source application, which allows - together with a plugin called "Twitter streaming import" - both the capture of data from the platform and the understanding of what was obtained through instruments for Network Analysis. The general idea is to present a network scheme for people's activities. For example - as seen in Figure 1- a user who emits a tweet is represented as a node, with an arrow that goes to his tweet, in the case of having more elements such as a hashtag or a link. These are established as new nodes with their edges from the tweet. A network thus formed allows us to schematically observe the behaviour of the people and the information they generate, the most used hashtag being the one that receives the most lines or edges, or the size of the network directly linked to the number of people and data involved. Moreover, either through references to users, retweeting or collective use of hashtags, links or images.1

In the particular case of this investigation, the program was configured so that not only the messages but also the users, mentions, retweets, links and linked hashtags are captured, in order to have a more considerable amount of data for analysis. In this way, the capture began from 10:00 a.m. on February 21 until 1:30 p.m. on February 27, 2020, considering the hashtags already mentioned. The capture was made in February since it corresponds to the Carnival holiday, one of the longest in the Ecuadorian calendar, opting for it since historically on festive dates, there is an increase in deaths from road accidents. With that observation, it would indirectly increase the probability that organ donation and treatment will be treated in networks. Statistics showed that in February 2020, there was an increase of 15% in fatalities due to traffic accidents, concerning 2019, reaching 178 deaths (Agencia Nacional de Transito, 2020) even so, the desired data was not accessed as see below.

3.Results and discussion

From the period mentioned in the methodology, data referring to organ donation were not obtained, demonstrating that the debate around the subject does not have higher dynamics. Some factors that could have contributed to the lack of data include the carnival holiday. On the other hand, the greater visibility of different types of donation forms was already envisioned when conducting the research.

The absence of data around the subject cannot conclude absolutely that organ donation is not of concern to the Ecuadorian community. Most debates may take place in physical spaces, for example - if visibility can be observed as low concerning other issues. The emerging third phase focused on the analysis of organ donation from a different approach. In this case, instead of pointing to tweets that had words or hashtags linked directly to organ donation, a total sample of tweets posted in Ecuador would be captured. To then see if any of them referred to organ donation, and what percentage of these expressions had with the total sample.

With this intention, Gephi was configured to capture tweets according to their geographical location by using an instrument that determines, through longitude and latitude, a rectangular data capture area that includes the continental and insular parts of Ecuador. This methodological procedure has at least two limitations, the first referring to the definition of the capture area, which, by its form, could not refer precisely to Ecuador. However, it includes parts of Colombia and Peru, as seen in Figure 2. The second limitation takes in the scope of the Twitter API that can process only a maximum number of requests for information every 15 minutes. It meant when it reached the ceiling of requests for information (i.e. through the text of a tweet or hashtag) within that time, the capture was interrupted until the next quarter of an hour. A thorough sampling was not possible.

The other phase began in parallel with the final days of the previous data capture when it was observed that there would be no results. Thus, data were collected from 2:45 p.m. to 10:25 p.m. on February 26, 2020. The collected data had a network with 1,229 nodes, of which 389 were tweets or retweets captured, none regarding organ donation. The trends within the captured tweets were political issues in general, an anti-drug campaign "Day Without H," and the arrival of the coronavirus in Latin America.

The campaign in Ecuador, "Yo Soy Donante Y Mi Familia Lo Sabe," has low visibility, and most of the tweets regarding it are provided by INDOT (Instituto Nacional de Donaccion y Trasplante de Organos, Tejidos y Celulas) and not by citizens. Some countries, such as the United States of America, Italy, and Spain, promote organ donation in social networking sites and have generated some hopeful results, such as increasing organ donor consent rates (Cucchetti et al., 2012; Smith et al., 2016; Stefanone et al., 2012). Nevertheless, in 2018 in Ecuador, donor identification increased in relation to 2017; 553 cases were reported among alerts (328), effective donors (206), and real donors (18), both of organs and tissues. These numbers concerning the previous year exceeded it by 29 cases (see Figure 3) (INDOT, 2020). Until 2018, Ecuador had 7.7 donors per million inhabitants, thus overcoming myths about organ donation, which helped Ecuadorians lost their fear of negatives thoughts said about it. Apart from reluctance based on religion, people believe that there may be an illegal organ or tissue trafficking.

In this manner, an absence of consciousness and a more remarkable measure of unwillingness is similarly a noticeable factor that is related to limited social media use (Pacheco et al., 2017). In Ecuador, organ donation has not been of great interest to the population, even though few investigations attempt to determine positive and negative aspects that may affect the decision to donate organs (Alvarez & Valencia, 2011). Although on March 4, 2011, the Organic Law of Donation and Transplantation of Organs, Tissues, and Cells in Ecuador established that each Ecuadorian and foreign resident are donors (INDOT, 2020). People sign in to online platforms to communicate with each other to boost their self-esteem and to find information relating to different medical problems (Pacheco et al., 2017). Even though some areas deserve additional study in opinion leadership on the topic of organ donation on social media, education campaigns may likely include social statements and family discussions about organ donation and increase consent rates. Further research is required to find the best way to use Twitter as a platform for discussing organ donation since it is currently not being used effectively in this way.

The global number of commercial transplants is estimated to be around 10,000 annually, approximately 10 percent of all transplants. In most cases, the kidney is sold by a living person, illegally. Many countries have laws that prohibit the sale and purchase of organs. However, countries like Pakistan, the Philippines, Egypt and China still do organ trafficking. This practice is also prohibited by the World Health Organization, which requires that organ donation be altruistic (Efrat, 2016). Fortunately, Ecuador does not show any confirmed figures on organ and tissue trafficking at present. Furthermore, it surpasses other Latin American countries in organ donation. In Paraguay, the donation rate is 3 per million inhabitants, also until 2017, Mexico registered 4.5 donors per million inhabitants. In Mexico, there are more than 21,000 people on the waiting list.

4.Conclusion

Data referring to organ donation were not obtained in this study. It demonstrates that the debate around the subject does not have higher dynamics on Twitter. Some factors that could have contributed to the lack of data include the carnival holiday. On the other hand, the greater visibility of different types of donation forms was already envisioned when conducting the research. Moreover, the little public debate around organ donation is a dangerous symptom if it is considered that public policy can be terminated if no society criticizes, uses and improves. The results obtained here show an alarming absence of organ donation either as a practice or as a policy within Ecuador, this within a platform characterized today as having as its primary objective the political debate. We understand that donation as a public policy is relevant and necessary as part of the guarantee of civil rights. However, its existence in the regulations does not yet show the desired reflections in action; if the culture does not change by decree, then it is necessary to establish ways of repositioning this issue in the collective imaginary, which would lead to social action. The new research focused on the visibility of the subject, both face-to-face campaigns and digital campaigns that take advantage of the pedagogical potential of the network, the multimedia, the asynchronous and the ubiquitous are necessary to revitalize the donation and promote a new life for several citizens.

Footnote

1 Within the network analysis there are standard metrics such as the "Support" or the "influence" of a node that respond to the number of links it receives and sends respectively, linked these measurements directly with visibility; the network diameter that corresponds to the distance between the nodes furthest from a network, or the density that is the percentage of existing edges with respect to all the edges that a given network could have; the higher the density, the greater the connection/ references between the nodes of the network.

2 1.523360, -75.032186 Northeast, -5.142836, -92.307070 Southwest.

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