Abstract
BACKGROUND:
Health crises occur both regionally and globally. Online social networks are widely used technical resources that allow users to share large amounts of information with increasing reach and velocity. Thus, the capacity of spreading information about epidemics through social media allows members of a population and health professionals or agencies to collaborate.
METHOD:
This study presents results obtained in an integrative review, including examples of how social media enabled collaboration in health surveillance to treat the epidemies of Dengue, Zika, and H1N1. The literature review covers studies published between 2009 and 2017.
RESULTS:
The studies reviewed indicate that social media interactions are tools for the rapid dissemination of information. These networks operate at low cost and allow information to reach audiences in need of information and who otherwise would not receive it. Social media allowed researchers to monitor evolving epidemics and obtain epidemiological data useful for decision-making in health surveillance.
CONCLUSIONS:
Despite the widespread use of social networks, there are opportunities for improvement, especially in technology for treatment.
Introduction
In recent decades, the world has suffered a variety of public health epidemics, including H1N1 in 2009, Ebola in 2013 and 2016, Zika in 2015, and Dengue in 2016. These epidemics have often affected large populations; in some cases, these crises led to large-scale mortality. Ebola killed about 11,000 people in recent years, while the H1N1 flu epidemic led to the death of approximately 8,000 to 18,000 people. In some cases, these epidemics are ongoing - Dengue, for example, infects as many as 400 million people annually. During ongoing epidemics, the affected populations lack information on the diseases, the geographical location(s) affected, the risks to those impacted, and methods of prevention [1]. Epidemics such as these do not occur as frequently as floods and hurricanes; thus, information on the response is partial and conflicting, and the population obtains information via social media. The consequence for society is that people use this often ambiguous infor-mation to decide about travel, whether to seek treatment and what to do for prevention [2].
Social media represents a change in how information is accessed and shared, allowing the rapid sharing of text-based content and videos. Users can sort news and information, exchange opinions, and provide recommendations. Thus, social networks allow people with similar characteristics or common goals to connect and collaborate on common interests. In the age of social networking, studies about the use of these networks for the sharing of public health information and local events increasingly appear in literature Social media information can be used to understand how local populations view health problems or even to predict, detect, and track disease outbreaks [3].
Online communication through social networks like Facebook, Instagram, and Twitter has created new ways for people to share information about eme-rgencies, especially those of a public health nature [4]. Traditionally, public health agencies have transmitted information to the public primarily through print media, television, and radio. These forms of media still play a significant role both in intensifying and attenuating risk within a population. However, with regards to the public health H1N1 emergency in 2009, Twitter was cited as the most frequently-used source of information on the pandemic by respondents to a population-based survey cited [5].
Public health professionals can also use health data obtained from social media to detect potential risks of epidemics. It has been shown that by performing qualitative and quantitative analysis of data from social media, it is possible to draw a picture of the be-havior and the opinion dynamics of a population [5]. With the information available, health officials can establish a cycle of monitoring and public response online, identifying emergencies, and using these net-works’ communication strategies for adaptation of educational campaigns. This transition has gone be-yond public health emergency settings. Public he-alth officials recognize the value of social media. Research conducted in the US on the extent of social media use in public health more generally has shown that 60% of local health departments used social media to disseminate information. The most common platform for that dissemination was Twitter [6], a social network and server for microblogging texts of up to 140 characters.
In this article, we explore how social media platforms are being used to promote the collaborative participation of its members, researchers, and health professionals to generate relevant information and expand communication on epidemiological health emergencies. We aim to establish how data on social networks are used to help identify, track, and generate useful information on disease outbreaks, with a focus on recent H1N1, Dengue, and Zika virus epidemics. We chose these diseases due to their high dissemination capacity and the potential for significant global health damage. This review will offer information about the use of social networks in collaboration and monitoring to prevent Dengue, H1N1, and Zika epidemics.
Background
In modern society, the web has become an ess-ential tool for connecting people, spread clear he-alth information allowing new forms of interaction between users that sharing knowledge and interests. These relationships create networks that disseminate information of common interest [7]. Among this information, we highlight themes associated with public health, especially in crises such as epidemics. Sabeeh et al. [8] point out that techniques and methods that allow collaboration are necessary to meet population needs in healthcare, including by strengthening the use of technological solutions to share peer knowledge.
In 1963, Alexander Langmuir conceptualized he-alth surveillance as the continuous observation of the distribution and trends of the incidence of diseases through the systematic collection, consolidation, and evaluation of reports of morbidity and mortality, as well as other relevant data, and to the regular dissemination of such information to all who need to know it. Public health professionals and researchers need access to health information, educational status, and training tools, especially to respond to emergencies [9]. Social networks provide access to millions of records, an unprecedented opportunity for large-scale inference and information dissemination among the general population. Thus, new monitoring and reporting strategies for health applications can be developed, especially in health surveillance [10].
The research studies reviewed herein focus on the epidemiological contexts of recent outbreaks of Influenza A (H1N1), Dengue, and Zika virus. Human influenza is an infectious viral disease that is highly communicable, of global reach, and which goes through seasonal epidemic patterns. Small frequent changes in common antigens (drifts) make individuals infected before only partially protected from re-infection, which facilitates the circulation of the virus annually. Influenza type A (H1N1) had not been identified as a cause of infections in people before the pandemic of 2009. Genetic analyses of this virus have shown that it originated from animal influenza viruses and is unrelated to the human seasonal viruses that have been in circulation since 1977. Unlike typical seasonal flu patterns, however, H1N1 caused high levels of summer infections in the Northern Hemisphere, and activity increased even further during the colder months.
Influenza H1N1 was the first influenza pandemic to happen in the globalized modern world. Rapid and intense traffic of people and goods has a significant influence on the spread of the virus among countries. However, also due to globalization, information about this epidemic was shared and transmitted in real-time. The prevalence of web-based social communication introduced new tools for follow-up and monitoring through collaboration between researchers, public health officials, and the general population [11]. Research on this last outbreak of the H1N1 virus revealed that Twitter was the social network that collaborated the most. As a result of the tremendous overall use of Twitter, researchers could measure the real-time perceptions of the population on the situation and their interactions with official agencies and health professionals.
Dengue fever is a debilitating mosquito-borne in-fection caused by any one of four closely-related Dengue viruses. If untreated, Dengue can lead to potentially lethal complications, including Dengue hemorrhagic fever. In fact, despite massive media propaganda and costly household control measures, governments have been unable to reduce the prevalence of mosquito-based epidemics via information transmission alone. According to the World Health Organization (WHO), Dengue is currently the tropical disease that spreads most quickly around the world. WHO considers the infection to be already endemic in more than 125 countries, and it has the potential to become a worldwide epidemic.
Zika virus, the third disease covered in this review, is a flavivirus transmitted through the bite of the Aedes Aegypti mosquito. This disease causes moderate fever and skin rashes during a period of 2 to 7 days. However, it is estimated that 80% of infected people have no symptoms [26]. Although symptoms have a short duration, this disease has a high potential for dissemination and may cause significant health complications, including Guillain-Barre syndrome, an autoimmune disease targeting the peripheral nervous system causing weakness, numbness and even paralysis. Zika can infect people of any age and has no identified cure, but can be particularly devastating for pregnant women. This infection can cause fetal brain malformation and microcephaly –when babies are born with a smaller than average head circumference, which is usually larger than 32 cm, causing brain damage, rare and irreversible birth defects, or even fetal death [12].
Methodology
We assembled relevant studies using integrative review, a broad method of review, allowing the inclusion of theoretical and empirical literature and also studies with a quantitative and qualitative methodological approach. Using the methodology of Cooper [13], phases of each study were assessed and de-lineated, including the definition of the research problem, data collection methods, and verification, analysis, and interpretation of the data. We proceeded through the following steps: Theme identification, selection of research hypothesis or research question, and keywords selection; Inclusion and exclusion criteria definition, database selection, and literature search; Categorization of studies via information extraction, organization and summarization to form a research database; Evaluation of studies included in the review and critical analysis of selected studies; Interpretation of results and discussion of results for future research; Knowledge synthesis and detailed description of the review.
Ganong recommends the use of criteria for the inclusion and exclusion of work in integrative reviews [14]. Thus, we only included papers that had been published and made available in full, which encompassed scientific reports (such as research articles, technical reports, and project analyses), working documents, government documents, and evaluations supported by Grey Literature. Moreover, we only considered reports published from 2009 onwards, in either Portuguese or English, relevant to the themes of health or informatics/information technology, and focused on the application of social networks and collaborative cases for health surveillance. Studies that dealt with collaboration in health surveillance but did not address H1N1, Dengue, or Zika or that did not evaluate the utilization of social media were excluded.
For the search, we selected the databases Science Direct (www-sciencedirect-com.web.bisu.edu.cn); Springer (www.springerlink.com); Scielo (www.scielo.org); and IEEE Xplore (www.ieeexplore.ieee.org). We se-arched for articles based on Grey Literature in re-search institutions and specialized health agencies (WHO, Fiocruz, and others) with studies related to occupational diseases.
The terms we searched for in the databases were: “Social Media”, “Collaboration in Health”, “Health Surveillance”, “Dengue”, “Zika”, “H1N1”, “Twitter”, “Facebook”, and “Instagram”. There were no controlled descriptors for a broader search. After the first step, terms were crossed using conjunctions and varied by alternating diseases, for instance (H1N1) AND EPIDEMICS AND (SOCIAL MEDIA OR SOCIAL NETWORK AND DATA) AND HEA-LTH AND EMERGENCY; (DENGUE) AND EPIDEMICS AND (SOCIAL MEDIA OR SOCIAL NETWORK AND DATA) AND HEALTH AND EMERGENCY; (ZIKA) AND EPIDEMICS AND (SOCIAL MEDIA OR SOCIAL NETWORK AND DATA) AND HEALTH AND EMERGENCY.
Results
Database searches were initially carried out separately by disease. In this initial phase, we found 3,291 articles, out of which 1,145 articles were on Dengue disease (34.80%), 2,131 on H1N1 (64.75%), and 15 on Zika (0.45%).
In the second phase, we applied the selection criteria. We only included studies in Portuguese or English, related to the theme, and published since 2009. We selected 449 studies (13.64% of the total 3,291), 174 of which were about Dengue, 260 about H1N1, and 15 about Zika. Then, we proceeded to read the studies’ titles and abstracts. Due to their relative scarcity, articles related to Zika were all read in their entirety.
Out of the 499 studies, we selected 21 for complete analysis via integrative review. Only nine were relevant for the discussion on the theme. Figure 1 presents the flowchart used in the selection process of the articles included in the integrative review, and Table 1 shows a summary of these nine studies.

Flowchart related to the process of the selection of articles.
Summary of the work
The studies selected in the second phase are distributed by research base as follows: 48 articles were obtained from PubMed, of which three were selected according to the criterion and 45 excluded; IEEE Xplore yielded four articles in total, of which none were excluded; ScienceDirect revealed 72 articles in total, of which six were selected and 66 excluded; Springer returned 323 articles in total, of which five were selected and 318 excluded; and the SciELO database had two relevant articles, from which one was selected and one excluded. Using the Grey Literature, two works were found and selected.
According to the literature, nearly all humans have had contact with the H1N1 virus since the Spanish flu epidemic of 1918. The contact has been either by third or fourth generation infections. By swapping and changing its genes, H1N1 has managed to continue circulating for more than a century [15, 16]. However, H1N1 prevalence saw its apex in 2009 with a global outbreak that, according to the World Health Organization, caused the death of more than 18,000 people.
The Influenza A virus global pandemic (H1N1) initially emerged in Mexico in early April 2009. It soon spread rapidly around the world, putting the global public health community on alert. In the second half of April of that year, the World Health Organization (WHO) issued its first alert about the new epidemic.
At that moment, social networking tools helped to predict the behavior of the population and signaled appropriate actions for health surveillance. Donelle and Booth demonstrated the efficacy of Twitter during the 2009 H1N1 pandemic in their study “Health Tweets: An Exploration of Health Promotion on Twitter” [17]. Twitter was used to update the public on waiting times for influenza vaccination and the distribution of government alerts. Their study demonstrated that determinants of overall health are widely discussed by users of the technology of social networks like Twitter, showing that such platforms can play a fundamental role in the dissemination of information.
Eysenbach and Chew presented another example of the use of social media in health in their study “Pandemics in the age of Twitter: the content analysis of tweets during the 2009 H1N1 outbreak” [5]. The authors describe how they were able to assess public perceptions of the H1N1 pandemic via Twitter. There was a sharp increase of messages on Twitter with the term H1N1; the authors related these mentions to the volume of news on the subject. They concluded that Twitter is potentially suitable for text mining and longitudinal analysis.
Researchers have shown that for public health educators, Twitter and other social networks may serve as a good indicator of seasonal H1N1 epidemics –in particular, factors that influence the emergence and spread of the disease. These platforms play a critical role in disseminating information only if communication is done strategically, through reliable processes, and via high-yield avenues (through a dense network of consistent and real-time followers) [18].
Works related to the Zika virus
The Zika virus was first detected in Brazil in May 2015. In November of that year, the Brazilian Ministry of Health confirmed the probable relationship between Zika and microcephaly. By January 2016, the Ministry of Health had investigated 3,448 cases of microcephaly in the country and its possible relationship to prenatal Zika virus infection. The WHO then called the Emergency Committee to Regulate International Health to analyze the Zika virus and its dissemination and to determine the consequences for public health in the global context. As a result, strategies were defined, calling for research to clarify aspects of the association between the Zika virus and microcephaly. Data from the Pan-American Health Organization (PAHO), considered a regional structure of the WHO, 3–4 million cases of Zika were confirmed in 2016 on the American continent alone [19].
Health surveillance was known to play a vital role in improving the understanding of the disease in real-time, including its potential epidemiological and clinical effects, and the circulation dynamics of the virus. In this context, social networks were vital. Al-though these networks could replace in-person health education, social networks could be used to identify and track health populations [20].
Social network analysis showed that there was a collaboration between community and organization/health professionals in response to the Zika epi-demic. This collaboration was observed on Fiocruz’s social network and in the article “Visual Archives concerning Zika virus: images on Instagram as part of the constitution of an epidemic memory” [21] (sel-ected works found in the systematic review).
Social media are important tools for information dissemination. Facebook has been reported as the largest social network in constant use, serving as a strong platform for providing specific intervention to the use of information in a contemporary way [26]. Fiocruz’s Facebook page was widely used for monitoring and disseminating information about the Zika virus, especially during the epidemic, to promote educational media campaigns. Many visual cues and standardization of records were employed to ensure that the public identified the information as coming from a secure source. Figure 2 illustrates this form of communication on the network.

Zika virus campaign in the media (Facebook). Source: Highlights Fiocruz Network 2016 [24].
Furthermore, the institution monitored the comments of its members in response to these official announcements. Through this monitoring, Fiocruz was able to identify the evolution of cases and themes about the disease with higher indices of doubt in the general population. Then, based on the feedback, new information was posted to help settle questions, promote guidelines to the public about customer service networks relevant to Zika, advertise jobs for workers to perform clinical exams, and indicate locations that searched for complications like microcephaly.
This network demonstrated that, in addition to the communication professionals of the Fiocruz, resea-rchers and health professionals were vital collaborators. The goal was to ensure the alignment and cor-rectness of content produced in order to educate the population about available services adequately. In the same vein, health professionals and researchers have appropriated the reports and facts brought forward by the public, generating recommendations and communicating new strategies and procedures to hospitals and laboratories.
Another study related to the Zika virus is “Visual archives concerning Zika virus: images on Instagram as part of the constitution of an epidemic memory” [21]. The authors used ImageCloud –software developed by the Laboratory of Studies on Image and Cyberculture (Labic) at the Federal Universi-ty of Espírito Santo, Brazil. The software selected the most-liked posts on Instagram with the hashtag #Zikavirus in November and December 2015 to form an image cloud –an image mosaic.
Since 2003, Fiocruz instituted the Dengue Network in order to promote Dengue control actions in Brazil. The strategy of disease control was an intersectional and multidisciplinary combination of surveillance, prevention, and health promotion activities in the areas needing environmental control. These activities were coupled with communication and management of information, social mobilization, laboratory services, referral, education, and search strategies.
The Dengue Network integrates three lines of action: local socio-environmental diagnosis, continuing formation of local social agents, and ongoing actions to reduce Dengue. In 2015, Fiocruz restructured the network and started using social networks (Twitter, Facebook, YouTube, and Instagram) as spa-ces of interaction between the scientific community and people during the epidemics of the disease. As a side effect, major urban problems became evident: high demographic concentration, lack of basic sanitation, inadequate housing, and poor-quality education –factors that contribute significantly to the spread of Dengue. Citizens on Facebook and Twitter helped to map Aedes Aegypti’s focus sites so that authorities could carry out actions in response [22].
In their study, Marques et al. analyzed “the potential of Twitter data for estimating and forecasting De-ngue cases.” They showed that tweets related to De-ngue cases could successfully nowcast (estimate Dengue in the present week) and forecast (predict Dengue up to 8 weeks in the future) at country and city levels with high estimation accuracy [23]. The authors quantitatively evaluated the usefulness of the data acquired from Twitter for the early detection and weekly monitoring of Dengue epidemics. They also compared the use of tweets with other available web-based data, Google Trends, and Wikipedia access logs.
Also, Chen et al. showed that models built on the fraction of Google search volume for Dengue-related queries were able to adequately estimate true activity according to official data reported by national ministries of health or the WHO during the time analyzed [1].
The populations of many different countries have been affected by Dengue. Because of this, commun-ities can play an essential role in combating and pre-venting mosquito-borne diseases. The article “VazaDengue: An information system for preventing and combating mosquito-borne diseases with social networks” presents a collaborative computerized system called VazaDengue. VazaDengue offers users web and mobile platform on which they can help prevent and combat mosquito-borne diseases. Citizens can report mosquito breeding and Dengue cases to each other, and the reports are made available to the community and health agencies. The system also was designed to proactively monitor social media networks like Twitter to enrich the information provided [24].
Discussion
An integrative review of relevant literature demonstrated that social media platforms are essential tools for the rapid dissemination of information at low cost. These platforms reach audiences in need of accurate information, especially in times of public health emergencies. Besides, they have proved useful to professionals and health departments in monitoring and generating information on epidemics. In many cases, social networks can become platforms for promoting health education campaigns to the general public, both for general health and in response to specific needs or disease outbreaks.
The usefulness of social media in promoting public health arises, among other reasons, from the ability of users to have many close contacts, social influence, and access to resources that bind people together. With this, these media become important in disease prevention, detection, and treatment.
There are limitations to these studies. Although it is clear that people use social networks to communicate health problems, there are relatively few high-quality studies on how to best use social networks to promote public health. Additionally, the studies presented here raise issues of data reliability, objectivity, and relevance, despite their de-monstrated importance in health. For instance, social networks can amplify rumors on the gravity of a situation, potentially inducing people to make wrong decisions or even causing panic. The misunderstanding is mostly due to the user’s inability to verify the source of information obtained from person-to-person [25] –a social network issue that still needs improvements.
Completeness and clarity of information is an-other issue to improve. When information is spread over multiple posts, the overall message can become ambiguous. Thus, the more precise the subject in the message(s), the higher the chances of adequate understanding and clarity of the data by the population.
The dynamic aspect of networks is also a challenge for epidemiological scenarios. Constant changes oc-cur in public health settings. Therefore, postings need frequent monitoring, and responses should be quick enough to generate the desired mass effect and be used for real-time health surveillance.
Several of the papers we analyzed dealt with the theme of collaboration in social networks for health goals in the cases of H1N1, Zika, and Dengue epidemics. The main aspects of these studies are summarized in Table 2.
Summary of the works analyzed
Summary of the works analyzed
In analyzing the works presented above, we identified Twitter as the leading social network of interest in current literature. Twitter is unique among social media platforms in that it allows many technological approaches to treat data. It also has a broad reach and popularity.
Among the diseases analyzed, Dengue had the highest number of studies, possibly because this epidemic has been known for a long time and has a global reach.
Among the papers we selected, we highlight an article about an “infoveillance” system developed to continuously gather and mine textual information from Twitter via its Application Programming Interface [5]. The system gathered new publicly-available tweets containing keywords of interest and stored them in an internal relational database, including metadata such as username and time. This database served as the primary dataset for many statistical analyses presented elsewhere.
VazaDengue [24] is another example of such a system in that it proactively monitors social media networks like Twitter to enrich the information provided by users. It processes the natural language text from the network to classify tweets according to a set of predefined categories. After classification, relevant tweets are provided to users as geolocated reports. After analyzing the reports, health agents have tended to agree with the relevance of the classified tweets and confirm that the concentration of tweets is likely to be useful for monitoring mosquito manifestation in big cities. The relationship between health agents and society through this social network shows the potential for collaboration between the parties.
Another study [23] presented a system developed by the Observatories of Dengue Lab: a web-service that monitors tweeting activity associated with De-ngue. The method consists of collecting all tweets containing one or several keywords (“Dengue,” “Aedes,” and “Aegypti”). A machine-learning algorithm then identifies and selects only those suggestive of a personal experience with Dengue (i.e., being infected, knowing someone with Dengue, and similar). The automated classifier works based on pre-vious classifications performed by human specialists. Finally, this system uses a model applied to indicate whether tweets are a positive predictor for Dengue cases.
We particularly favor the strategy for information dissemination adopted by Fiocruz during the severe Zika virus epidemic in Brazil in 2012. The strategy to analyze posts on Facebook to inform decisions made by health teams and researchers in the monitoring of Zika was highly effective. Communication protocols were created on Fiocruz’s Facebook page to guarantee the authenticity of the messages, and the collaborative aspect of this network is evident in the information collected to promote the health research advances.
Finally, we highlight an article on Dengue surveillance based on a computational model of the spatio-temporal locality of Twitter [27]. This model created a surveillance methodology based on four dimensions: volume, location, time, and public perception. This analysis enabled the researchers to verify the high correlation between the number of cases reported by social statistics and the number of tweets posted during the same period. This corre-lation suggested a new approach for Dengue surve-illance: a weekly overview of relevant social media activity in each city compared with the weeks before. The most significant benefit of the methodology is the possibility of using it to predict other diseases.
The works highlighted above show the potential of social network data with or without the use of technological support tools to inform monitoring efforts and prediction of outbreaks for Dengue, Zika, and H1N1. The collaborative aspect was crucial to extract the analyses performed in all of them, either through technology or methodologies.
New forms of media, especially social media platforms, function as a means to provide timely updates and allowing rapid global public health collaboration. As such, these media fill information gaps often found in traditional disease surveillance.
Collaboration is essential in the application of social networks to health education and surveillance. This two-way communication allows a population-health professionals-population communication dyn-amic. To a certain extent, the selected papers analyzed in the integrative review portrayed the potential of social media collaboration between individual users to help in the prevention or the dissemination of in-formation about epidemic diseases. There are still opportunities for improvement, especially in the tech-nology itself, regarding its ability to inform frameworks, mechanisms, and algorithms of treatment; methods of searching for data relevant to a context; new ways of monitoring information; and compu-tational methods of evaluation of relationships bet-ween members of the network. Efforts are also needed to address problems related to objectivity, dyn-amism, rumor, and other aspects of the quality of the information that is disseminated. These are advancement opportunities for future work. In the case of VazaDengue, for example, a suggested further re-search step is to extend the classification of Instagram content, including the classification of pictures associated with potentially relevant posts, in order to include more posts in the analysis.
Social media-specific limitations need attention. One example is how not everyone who tweets about a disease is ill –they might be just interested or curious about it. Therefore, the detection of valid tweets for surveillance analysis will depend on a sufficient volume of interest to generate signals and compensate for other “noise”.
Overall, the analyzed studies reveal that there is still much to evolve in terms of technology and met-hodology. However, the potential for collaboration on social networks to contribute to health surveillance in cases such as epidemics of Dengue, Zika, and H1N1 is indisputable.
Conflict of interest
None to report.
