An Analysis of Canadian Facebook Posts about Lyme Disease between 2012 and Nikhil Kumar

Transcription

1 An Analysis of Canadian Facebook Posts about Lyme Disease between 212 and 216 Nikhil Kumar Earth Science 4MI3: Independent Study in Earth and Environmental Sciences Supervisor: Dr. N. Yiannakoulias December 9 th, 216

2 Kumar 2 Table of Contents Executive Summary... 3 Background. 4 Objectives Methods... 9 Results... 1 Discussion. 23 Conclusion.. 33 Acknowledgements.. 34 References. 35 Appendix A Appendix B Appendix C... 45

3 Kumar 3 Executive Summary: This study focused on Canadian Facebook posts about Lyme disease made in May of each year between 212 and 216 to examine patterns of information sharing over time. We attempt to understand existing perceptions of Lyme disease and whether social media impacted these views. We expected that a large part of the divide between scientific practice and public opinions is shaped by non-reliable sources. The findings of this study are important for understanding the influence of social media on Lyme disease perceptions, and improving how these platforms are used to ensure individuals have access to proper health information in the future. This study found that the posts were made across all ten provinces, including provinces in which Lyme is not yet endemic. The number of posts appears to be rising, with the greatest number of posts made in 216. The vast majority of those posting on Facebook were individuals outside the medical field, media or non-profit organizations. Specifically, 64 of the 732 posts, or roughly 83 percent, were made by individuals. The majority of posts, approximately 6 percent, were meant to raise awareness. Scientifically controversial posts were infrequent, at just 2.2 percent of the total. A statistical difference was found between the average number of awareness and controversial posts and the two other categories. The majority of shared content came from posts intended to raise awareness. Newsrelated content made up roughly 32 percent of the total, advocacy was roughly 16 percent, government content was 1 percent and scientific material was just 6 percent. Scientific content was shared infrequently, suggesting that non-reputable sources are extremely common on social media. This study concludes that non-authoritative sources of information on Lyme disease are have the potential to influence public perceptions.

4 Kumar 4 Background: A substantial portion of the global disease burden is attributable to vector-borne diseases, in which an organism spreads a pathogen from one infected host to another. Roughly one-sixth of all human illnesses and disabilities worldwide are attributed to vector-borne diseases, with over a billion people infected and a million deaths annually (Campbell-Lendrum et al., 215). In addition, these diseases can have broad socioeconomic impacts. This is because they may worsen health inequalities, since the greatest impact is often felt by the poor, affect development and can overwhelm health care systems (Campbell-Lendrum et al., 215). As such, it is important to understand the nature of these disease. Arthropods are particularly significant vectors, and include mosquitoes, ticks, lice, mites and fleas (Gubler, 29). A study by McMichael et al. (26) found that many infections caused by these vectors increase with temperature. As a result, climate change and global warming may have an impact on future infections, as previously unsuitable areas increasingly meet the physiological requirements of these organisms. One vector in particular that is expected to spread widely are ticks. Specifically, the range of Ixodes scapularis, commonly known as the deer tick, is expected to expand drastically in the coming years (Gage et al., 28; Ogden et al., 26). This is particularly concerning, as the I. scapularis and I. pacificus (west coast variant) are a known vectors for Lyme disease. Lyme disease is the most common vector-borne ailment in Europe and North America. It was identified in the mid-197s, and named after its town of origin in Connecticut, USA (Mead, 215). The bacteria responsible for Lyme disease is Borrelia burgdorferi, which primarily reside in small mammals, such as mice, and bird species (Mead, 215). I. scapularis, also known as blacklegged or deer ticks, acquire the bacteria by feeding on the infected reservoir hosts, and

5 Kumar 5 spread it through subsequent feedings. Humans are dead-end hosts, who are infected incidentally during late spring through late summer (Mead, 215). Infected individuals typically show symptoms three to fourteen days after a bite, and the first, and most identifiable, indication is the erythema migrans, a bulls-eye rash that develops in 6 to 9 percent of North American cases (Mead, 215). Other symptoms are flu-like, and include tiredness, fever, and headaches. If treatment is delayed, neurological defects, cardiac abnormalities and/or arthritis can develop as well (Mead, 215). Lyme disease can be cured by taking prescribed antibiotics to eliminate the bacterial pathogen. Specific dosages are dependent on an individual s age, allergies, medical history, pregnancy status and on whether they have any underlying health conditions (Health Canada, 216). The three drugs recommended by Health Canada (216) are Doxycycline, Cefuroxime axetil, and Amoxicillin. Amoxicillin is the recommended drug for those pregnant or for children under eight, and doxycycline is contraindicated for them. The exact duration of treatment varies between individuals, but the general antibiotic course takes between two to three weeks. Most of the patients who receive the correct antibiotic therapy do recover and have no signs of infection within twenty days (Hu, 216). The incidence of Lyme disease infections has been rising in Canada. In 29, the first year Canada began recording Lyme disease officially, there were 144 cases (Koffi et al., 216). This rose to 338 cases in 212, and to 917 in 215 (Health Canada, 216; Koffi et al., 216). While specific incidence rates vary by province, the national incidence rate is fairly low, but has increased over time. Between 29 and 213, the incidence rose from.4 to 1.9 per 1 individuals (Health Canada, 215). Climate change is expected to increase the tick (source) population, more areas in Canada are very likely to become suitable habitats for the vector.

6 Kumar 6 Given the rising incidence rates and the severity of the disease, it is important to have good testing and diagnostic practices to identify those who might be infected. Currently, the greatest risk for Lyme disease in Canada is within the southern parts of British Colombia, Manitoba, Quebec, New Brunswick, parts of Nova Scotia and southern and southeastern Ontario (Aenishaenslin et al., 216; Health Canada, 216). Those who spend time outdoors, specifically in woody areas where ticks are endemic, face the greatest threat. In Canada, diagnosis of Lyme disease is primarily clinical. Patients who exhibit the erythema migrans (EM) and flu-like symptoms, and have been in an endemic area, are treated without subsequent testing (Health Canada, 216; Hu, 215). For those who could have been exposed to ticks, and have symptoms consistent with more developed Lyme disease but do not present the EM, Canada uses a two-tier serological testing: enzyme-linked immunosorbent assay (ELISA), followed by the Western blot (Health Canada, 216; Hu, 215). The initial testing for Lyme disease is the enzyme-linked immunosorbent assay (ELISA). This detects specific antibodies that are present if the individual has been infected with the B. burgdorferi bacteria (Hu, 215). However, this test lacks sensitivity, especially in the early stages, and false positives are also fairly common; in fact, at least five percent of the healthy population will test positive due to antibodies from unrelated causes (Hu, 215). This is because ELISA uses whole cells of B. burgdorferi, and the test is not specific to Lyme antibodies. In early stages of Lyme disease, ELISA tests are about 4 to 6 percent sensitive, and this number rises to 7 to 9 percent in later weeks (Bunikis and Barbour, 22). Individuals with a negative ELISA test are considered negative for Lyme disease and there is no need for the second stage. Individuals with a positive ELISA test are given the Western blot test, for which antigens specific to Lyme disease have been defined (Bunikis and Barbour, 22). The Western blot has a

7 Kumar 7 greater sensitivity to Lyme disease antibodies, and can either confirm or refute a positive ELISA test (Hu, 215). A positive Western blot is taken as the cue for treatment. It is important to note that the standard testing protocols expects that an individual needs to have been in an endemic area and showcase some clinical symptoms in order to undergo the serological testing. In spite of the clear protocols in place to test for Lyme disease, the general public remains divided in their views about the risk of Lyme. Often, individuals self-diagnose with Lyme disease based on information from the Internet, traditional media and social networks, even while the probability of disease is still fairly low (Bunikis and Barbour, 22). False diagnosis leads to unnecessary antibiotic treatments, which are often prolonged and potentially detrimental to health (Sigal, 199). This is because it can lead to other problems, such as antibiotic resistance (Blaser, 211). Many Canadians choose to undergo further Lyme disease testing through commercial laboratories in the US if they do not test positive using the Canadian protocols. Often, these individuals eventually obtain a positive test from the US (Gregson et al., 215). One reason many Canadians are choosing not to follow the standard diagnostic guidelines is that they get information from advocacy groups, such as Canadian Lyme Disease Foundation (CanLyme) and International Lyme and Associated Diseases Society (ILADS), that conflicts with the recommendations of Health Canada. For instance, CanLyme claims getting a negative result from a provincial lab provide little information, as the testing procedures are largely flawed and that testing becomes less accurate over time (Canadian Lyme Disease Foundation, n.d.). Alberta Lyme, another advocacy website, also states that Canadian testing is unreliable (Lyme Disease Association of Alberta, n.d.). Both of these websites provides readers with links to specific US testing laboratories. Despite the research finding numerous faults with the poor

8 Kumar 8 diagnostic methods of commercial labs, mainly due to terrible testing standards, invalidated techniques and a plethora of other reasons, many Canadians continue to utilize these American laboratories (Andany et al., 215; Moore et al. 216). With the rise in popularity of social networking websites, such as Facebook and Twitter, the sharing of information has become easier than ever before. These platforms often play a big part in shaping perspectives, as information, regardless of whether it is scientifically accurate, is very easily accessible. A review by Moorhead et al. (213) found that social media has an important role in health communications, as it allows for more accessible, shared and tailored information, increased interactions, spreading access to health information, public health surveillance, support to those ill, and has the potential to influence new health policies. Though there are a number of benefits, Moorhead et al. (213) did find that one of the issues is that the information available is not always of good quality or reliable. The study did not conclude whether social media improves or negatively impacts health communications. Another study compared social media usage between health care professionals and patients. It found that 52.3 percent of patients use Facebook, for social support and exchanging advice, and 59.9 percent used Twitter for learning and trading advice (Antheunis et al., 213). Though health professionals also used Twitter, the majority used LinkedIn. Antheunis et al. (213) identified disconnects between professionals and patients with regards to the preferred platforms and the reasons they utilize social media for health. One of the biggest barriers for patient was the fact that information was not always reliable.

9 Kumar 9 Objectives: This study seeks to examine Facebook posts on Lyme disease in order to understand trends in the information shared, and how it has changed over the years. Specific emphasis will be placed on posts and content related to the testing protocols. It is expected that the vast majority of the content will come from non-scientific sources aiming to increase awareness of the issue. Lastly, this study will also attempt to understand common perceptions of Lyme disease among the general public. Methods: We examined all Facebook posts made by Canadians between the years of 212 and 216 in the month of May containing the words Lyme disease. The month of May was selected as it is Lyme Disease Awareness Month (Canadian Lyme Disease Foundation, n.d.). Search parameters were adjusted using the appropriate settings on Facebook. Initially, Lyme disease was searched, and the side-bar fields were then modified to limit posts to Canada, and to the appropriate years. Posts were not limited to specific posters; all types of authors were included in the search. Years prior to 212 were omitted as they returned no results. The results obtained for each year were examined individually. Each post was read, saved, and systematically categorized into predetermined groups, or tags. To start, each post was marked by its province of origin. This was taken directly from the location details provided by Facebook. Next, the author was identified, and classified into one of five groups: individual, non-profit organization, media, medical services and other. Posts that fell into the individual category were those made by specific people. Posts made by advocacy groups, or other organizations that were designated by Facebook as a non-profit organization were placed accordingly. Posts made by news outlets were sorted into media,

10 Kumar 1 and those made by veterinarians or other medical experts were placed into medical services. Those that fell outside the scope of one of these four categories, including but not limited to business and personal pages, were sorted into other. Afterward, each post was identified as one of four types: personal, awareness, controversial and other. Posts regarding individual experiences were considered personal. Any post whose objective seemed to be increased awareness were classified as such, while those that made claims contesting official testing and treatment guidelines were deemed controversial. Other posts included anything that did not fit into one of the previous three categories. For posts that fit into multiple categories, an optional secondary grouping was given. Following this, posts were further tagged by whether they shared material ( yes ) or not ( no ). Posts that did include shared material were further characterized by the medium that was shared. Specifically, this was sorted into website, video and other, with other including anything that was not a website or a video, such as a photo. The shared content was then inspected, and placed into one of the following five categories: government, advocacy, science/medical, news and other. Anything that did not fit into one of the four named categories fell into other. Once posts for every year were organized and fully labelled appropriately in an Excel spreadsheet, they were sorted by year. Multiple pivot tables were created to organize the data and display trends in the posts from each year and over the entire five-year period.

11 Kumar 11 Results: All Years Compiled: The total number of posts varied between the years. 212 had the fewest posts, with just 61, while 216 had the most at 227. Exact numbers can be seen below in Table 1. Table 1. Total number of posts with the words Lyme disease made in Canada in May during the years of 212 to 216. Year Total Number of Posts Grand Total 732 There were notable trends in the location of each post, with the number of posts from certain provinces increasing over time. Specifically, Ontario had the greatest number of posts in every year except 212, and showed an especially sharp rise in 216. Nova Scotia was also among the top posters, as was British Columbia and Alberta. At some point, posts were made in every province, but not in any of the three territories. The overall trend suggest an increase in posts across most of Canada over time, with variability in this trend across provinces and between years. This is depicted by the linear trend-lines with positive slopes. Posts in Nova Scotia appear to be declining, as can be seen by the negative trend-line. This is shown visually in Figure 1.

12 Number of Posts Kumar 12 Number of Posts per Province between 212 and R² = R² =.4217 R² = R² =.15 R² = Year Alberta British Columbia Nova Scotia Ontario Saskatchewan Linear (Alberta) Linear (British Columbia) Linear (Nova Scotia) Linear (Ontario) Figure 1. Trends in the number of Lyme disease posts per province in Canada during May between 212 and 216.

13 Number of Posts Kumar 13 The specific authors of each post was variable. Figure 2 illustrates the number of post made by each type of author. Individuals were the most common poster, particularly in 212 where they were the only ones who posted about Lyme disease. The greatest variety was in 213, where all types were represented. Non-profit organizations were the second highest in 213, and fairly low in subsequent years. News and media had the fewest posts; in fact, apart from 213, there were no media tagged posts at all. Figure 3 illustrates the variance in each type of post over the five-year period. Awareness-related posts remained high over the entire period, with peaks in 213 and 216. In fact, the majority of posts in 212, relative to the total number of posts that year, were intended to generate awareness. Posts that did not fit into the three specific categories ( other ), were the second highest type. Very few posts were controversial; however, such posts were made in every year but 215. Also, despite a dip in 215, the number of personal posts appear to be rising over the years. Number of Posts per Author Type between 212 and Year Individual Media Medical Services Non-Profit Organization Other

14 Number of Posts Kumar 14 Figure 2. Trends in the different authors of Lyme disease posts in Canada during May between 212 and 216. Number of Posts per Category between 212 and Year 32 Awareness Controversial Other Personal Figure 3. Various types of Lyme disease posts made in Canada during May, between 212 and 216. Lastly, the total number of posts that shared material compared to those that did not can be seen in Table 2. The majority of posts included some form of shared content. Figure 4 presents the particular type of content that was shared. Other appears to dominate, with news and advocacy close behind. There is a drastic increase in other posts in 216 compared to previous years in which the values were fairly equal. Advocacy posts also peaked twice: 213 and 216. Notably, government and scientific content remained fairly low throughout the years, especially in comparison to the total number of posts.

15 Number of Posts Kumar 15 Table 2. Number of Lyme disease posts that shared content in Canada in May during 212 to 216. Year No Shared Yes to Shared Percent of Total Total Content Content that Shared % % % % % 227 Total % 732 Number of Posts Sorted by Type of Shared Content between 212 and Years Advocacy Government News Other Science / Medical Figure 4. Total number of posts made in Canada in May during the years of 212 to 216 that shared content, organized by the type of shared content. Figure 5 shows the different posts made within each province between 212 and 216. It illustrates that the greatest post type per province were awareness posts, while controversial and personal were the least. Other increased in frequency over the years, with a peak in 216.

16 Alberta British Columbia Manitoba Nova Scotia Ontario Saskatchewan Alberta British Columbia Manitoba New Brunswick Newfoundland and Labrador Nova Scotia Ontario PEI Quebec Saskatchewan Alberta British Columbia Manitoba New Brunswick Nova Scotia Ontario Quebec Saskatchewan Alberta British Columbia Manitoba New Brunswick Nova Scotia Ontario Quebec Saskatchewan Alberta British Columbia Manitoba New Brunswick Newfoundland and Labrador Nova Scotia Ontario Quebec Saskatchewan Number of Posts Kumar 16 Number of Each Post Type per Province and Year Figure 5. Total number of posts made in Canada in May between 212 and 216, organized by the type of post made and province. 212: Provinces (Year) Awareness Controversial Other Personal In 212, all posts were made by individuals. The two provinces with the most posts were Nova Scotia and Ontario. Not all other provinces were represented, and those that were (Alberta,

17 Kumar 17 British Columbia, Manitoba and Saskatchewan) had at most two posts. The vast majority of posts in 212 were meant to raise awareness. 42 of the 61 posts, or roughly 69 percent of posts, shared content. The majority came from Nova Scotia, which was the only province to have at least one of each type of content. Approximately 37 percent of posts were news articles, and all of them were shared in Nova Scotia. Advocacy-related material were made in every province. They were the second most shared content, and made up 29 percent of the total posts. Ontario and Nova Scotia were the only provinces to share anything scientific. Government posts were the least shared material, making up just 5.3 percent of all posts. Lastly, the type of shared content was compared to the type of post, for all provinces. It was found that that majority of posts that shared content were awareness focused. Additionally, awareness posts were mainly sharing news and advocacy material, with scientific content as the ranked third. One thing to note is that the sole controversial post shared advocacy content. 213: In 213, posts were made by all provinces. Ontario had the most posts, followed by Alberta and British Columbia, then Nova Scotia. Even though every province is represented, most of them have under ten posts. There was more diversity in the authors of these posts compared to 212. Individuals are still the most common poster; however, non-profit organizations have made numerous posts as well, specifically in Ontario and Alberta. Awareness posts are still the most prevalent type of posts, particularly in Ontario. These posts made up roughly 57 percent of all posts. Other was the second most common option, at 27 percent of the total posts. Once again, there were a few posts that were controversial, specifically in Alberta, Ontario and Nova Scotia. Controversial posts were the fewest of the four types, at just 3 percent. Approximately 13 percent of the total posts were personal.

18 Kumar 18 Of the 174 total posts, 14 shared content of varying mediums. This is roughly 6 percent of the total posts. The majority of the shared content in Ontario was classified as other. News and advocacy were also shared frequently, as the bars for them are fairly high for most provinces. In total, advocacy and news related material made up about 23 percent and 34 percent of shared content respectively. Together, they made up the majority of posts at 57 percent. Other was the second most common, thanks to its prominence in Ontario, and makes up 32 percent of posts. Government material (7 percent) and scientific sources (4 percent) rank the lowest. When comparing the type of shared content by the type of post, it once again becomes clear that awareness posts share the most content, predominantly news or advocacy related material. Together, these make up approximately 63 percent of all the awareness content. Other is also fairly high, and is the most type of shared material for non-awareness posts. Most of the controversial posts shared news related material. 214: In May 214, there were Lyme disease posts made in eight of the ten provinces, and no post were made in the three territories. Ontario had the greatest number of posts, followed by Nova Scotia. Alberta and British Columbia were the third and fourth ranked respectively. There was approximately a 4 post difference between Ontario in first place, and Nova Scotia in second. The remaining four provinces had under five posts each. The diversity in authors has significantly reduced compared to 213. Individuals are the most widespread posters across the board. They make up approximately 97 percent of all posts. All other author types combined still only make up 3 percent of the total; most provinces do not

19 Kumar 19 have any other types of posters, and the two that do (Alberta and Ontario) have just one of each. In Alberta, there is just one post that is not from an individual made by a non-profit organization. Most of the posts made were tagged as awareness; however, other was the most dominant category in Ontario. There was also a slight increase in controversial posts in Ontario, which was the only province to have posts of this nature. This is also a change from 213, where multiple provinces had controversial posts. Proportionally, 49 percent of posts fell into the awareness category, 4 percent into controversial, 29 percent were other and 18 percent were personal. 11 posts out of 148 shared content, and for the first time, every province is represented. Ontario showed a sharp increase in government content, with 45 percent of all posts that shared material in Ontario being of this nature. Other was the second most shared content in Ontario, and nationally. It made up 34 percent of posts in Ontario and 3 percent in Canada. Across the country, the number of advocacy-related shared content declined significantly, at just 1 percent of the total. News was the most commonly shared material in many provinces, and made up approximately 32 percent of the total. Government and scientific content remained low, at just 5 posts or roughly 5 percent of all shared material. Finally, comparing the type of shared content to the type of post showed unique results. While advocacy is still the post type that shares the most content, other has a significant amount of shared content as well. Within awareness, the majority of shares continued to be news related, with other and advocacy materials ranked second and third most frequently. In the other category, most of the shared material were government-related. The one controversial post shared advocacy-related content. Out of all shared posts, there were only five occurrences of scientific or medical content, four of which were for awareness purposes.

20 Kumar 2 215: Ontario is where the majority of posts were made, followed by British Columbia, then Nova Scotia. Only eight of the ten provinces are represented, and the remaining five provinces have under ten posts each. Quebec and Saskatchewan are tied in last place with the lowest number of posts. Proportionally, Ontario makes up approximately 42 percent of the total posts, 16 percent comes from British Columbia and 15 percent from Nova Scotia, and all other provinces combined make up the remaining 27 percent. Most of the posts were made by individuals across all eight provinces; 91 percent of the total posts were made by individuals. A small minority of them were from medical services (2 posts) and other (9 posts). Ontario and British Columbia are the only provinces to have content from medical services, which made up just under 2 percent of all posts. There were no posts by the media or non-profit organizations during May 215. Awareness posts were the most abundant, with most coming from Ontario, British Columbia and Nova Scotia. They made up 7 percent of all posts nationally, and 55 percent, 9 percent and 89 percent of posts in Ontario, British Columbia and Nova Scotia respectively. Posts tagged as other were the second most frequent, and made up 2 percent of the national total. There were a few scattered personal posts, and no controversial posts. Of the total 122 posts, 87 had shared content. The majority of this was other, in Ontario, as well as news and advocacy content. News articles were the only type of content shared fairly evenly by all provinces, and very few scientific material was shared. The total number of posts were comprised by 3 percent other posts, 38 percent news, 8 percent government and 14 percent advocacy material. Posts tagged awareness had most shared content, and most of this material was news related. Together, news and advocacy material made

21 Kumar 21 up 65 percent of all shared awareness content, while scientific and/or medical literature made up just over 6 percent. 216: The number of total posts increased significantly in 216. Nine of the ten provinces were represented, and the majority of the posts were made in Ontario. 122 of the 227 total posts, or roughly 54 percent, were made by Ontarians. British Columbia had the second most, followed by Alberta. Nova Scotia had the lowest amount of posts it has had over the five-year period, at 1. Other provinces had fairly low numbers as well. Though non-profit organizations, medical services and other have made some posts, individuals made the most posts in every province. They made roughly 92 percent of all posts in 216, while all other author types had under ten posts each. Specifically, there were eight posts by medical services, two by non-profit organizations and nine tagged as other. The bulk of the data falls under awareness, as it did for all prior years as well. There are a few controversial posts, in British Columbia, Ontario and Saskatchewan. Other is particularly dominant in Ontario, but fairly low in numbers in other provinces, as even when they are all combined it only makes up 9 percent of all posts. Ontario s other posts alone make up roughly 19 percent of all posts. Approximately 56 percent of posts were to raise awareness, of which 26 percent were from Ontario. The most common type of shared material by far was other, which made up 44 percent of all posts. This was followed by news content, at 28 percent. Advocacy came in third at 15 percent, while government and scientific literature were the lowest. Even combined, the two only comprised 13 percent of the total shared content. All forms of shared content were represented at least once in most provinces.

22 Kumar 22 Once again, awareness has the greatest amount of shared content, with 66 percent of all shared content falling within the awareness tag. Within this, news comprises the majority with 37 percent. However, there is a significant amount of other shared content, both within awareness and the other post type. Roughly 44 percent was other material. Advocacy was the third most frequently shared content type, following other and news (28 percent). It had roughly 15 percent. Of all posts shared for awareness purposes, only 17 were either government or scientific/medical content. Combined, the two make up just 15 percent of shared content for all awareness posts, and 13 percent of the grand total. Sample Posts (All Years): Figure 6. Post made in British Columbia in 214 stating what should be done if a tick is found.

23 Kumar 23 Figure 7: 216 post made in Alberta stating Lyme disease can be sexually transmitted. Figure 8: Post made in Ontario in 216 stating that Lyme can be transmitted in seconds, not days. Discussion: This study sought to understand trends in information regarding Lyme disease on Facebook, and changes in posting patterns over the years. It was expected that most posts would be non-scientific in nature. Discussion of Specific Posts: Posts were written colloquially, and authors often added emphasis through capitalization of specific words. The majority of examined posts were made for awareness purposes, but the information they provided were not always scientifically accurate. Figures 6 to 8 are three examples of these posts. Figure 6 shows a post made by an individual in British Columbia in 215. It starts with a brief anecdote, followed by a list of instructions one should follow if they find an embedded tick. This person posted in a Lyme endemic region, and some of the information is consistent with

24 Kumar 24 official Lyme treatment policy; Health Canada (216) does recommend the use of Doxycycline to treat Lyme disease in adults, while children under eight receive Amoxicillin. However, this individual is also recommending that antibiotics begin prior to a clinical or laboratory diagnosis, which can have harmful effects on health Sigal (199). Unnecessary antibiotics use can affect the neutral and beneficial bacteria in the body (Blaser, 211). This can promote resistance in the harmless bacteria, which can be passed on to Lyme disease bacteria, should the person become infected in the future. Furthermore, Health Canada (215) provides instructions to remove ticks using tweezers. In addition, the entire last paragraph directly contradicts the scientific evidence on the disease. It reads: [D]o NOT let them tell you that 99% of ticks are negative, that you don t need antibiotics right away, that a tick has to be attached for more than 24 hours to give you lyme, that only certain species of ticks carry lyme. That is all bunk. Old info that has led to what is being called a lyme crisis All of what is mentioned in this paragraph conflicts with the recommendations of Health Canada, the Center for Disease Control and Prevention, and the work of numerous researchers. First, not all ticks carry Lyme disease, and excessive antibiotics can do more harm than good. In fact, a study by Hojgaard et al. (28) found that the there was only a 2.4 percent likelihood of a tick bite transmitting Lyme to a human. Secondly, the Centers for Disease Control and Prevention (216), along with numerous other scientific sources, state that ticks must be attached for 36 to 48 hours for the bacterium to be transmitted. Thirdly, only the blacklegged tick is known to transmit Lyme disease (Mead, 215). Importantly, this post was liked by over four thousand people, and shared 35 times. This means that a significant public exposure to misinformation. Even those who may be slightly skeptical might be swayed due to the sheer number of people who have liked or shared this post.

25 Kumar 25 Figure 7 displays a post made this year in Alberta by an individual. It appears to be raising awareness of Lyme disease transmission, and shares content that states Lyme disease can be sexually transmitted. The first factor to observe is that this post was made in a non-endemic region. In addition, the content shared by the author comes from an informal advocacy website, and the research provided on the site is vague and incomplete. Importantly, there is no scientific research published a journal that says Lyme disease is sexually transmitted, and numerous papers and government agencies state sexual transmission is not possible Lastly, Figure 8 is another controversial awareness post made by an individual in 216, but in Ontario. This post states that contrary to official statements, Lyme disease can be transmitted instantly. It does this by comparing ticks to mosquitoes. Existing evidence suggests that a tick must be embedded for 36 to 48 hours before the disease can be transmitted because of the differences in the unique feeding mechanisms of ticks. Unlike mosquitoes, which feed rapidly and leave, ticks parasitize their hosts remain attached for several days. They do not begin feeding immediately upon contact, and it takes time for the Lyme disease bacteria to reach its saliva to be transmitted (Ritcher et al., 213). These three posts are important examples of the content in some Facebook posts on Lyme disease. There were numerous posts that made strong statements and cited non-authoritative sources as proof. Posts with content that contradicts scientific consensus may contribute to distrust towards the scientific community and medical experts, and in extreme cases, contribute to conspiracy theories that public health agencies and the government is lying to citizens. The persistence of posts that conflict with scientific recommendations makes it more likely for such information to be remembered, and can make altering these opinions with useful information more difficult. This could be an explanation for why many Canadians choose to undergo further

26 Kumar 26 testing at American laboratories. It could be that they have formulated their views on Lyme disease by seeing these posts and reading information from social media sources. Thus, when a Canadian laboratory test result is negative, they look for alternate avenues to confirm their beliefs and turn to the commercial laboratories in the United States. Discussion of Numerical Data: When examining location, most of the posts were made in provinces where the blacklegged ticks are endemic. There are six provinces in which Lyme disease is a known risk due to the ticks: British Columbia, Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia. Out of the 732 posts made in May between 212 and 216, 63 were made in one of these provinces and 12 were made in non-endemic regions. The majority of the posts made in endemic regions came from Ontario, at 55 percent (347 posts) of the total 63. Ontario also made up close to half of the total posts, at 47 percent of the total 732. This is not overly surprising as Ontario does have the greatest risk areas and the greatest population. Nova Scotia was the second most common, at 118 posts or 16 percent, British Columbia was third with 12 percent (91 posts), and Alberta was fourth with 1 percent (75 posts). It is important to note that while Lyme is endemic in Ontario, Nova Scotia and British Columbia, it is not yet a risk in Alberta (Health Canada, 216). Interestingly, Manitoba, a province where Lyme disease is present, did not have a significant number of posts. There were posts made in all other provinces at some point over the year as well, and Figure 3 showed a slight increase over most the provinces in 216. This suggests that more people are becoming aware of Lyme disease. As well, the total number of posts rose significantly in 216. Specifically, there were 227 posts made in 216, which is a 3 percent increase from the previous high of 174 posts and an 86 percent increase from 215. This indicates that individuals are becoming more interested in the topic.

27 Kumar 27 Examining Figures 2, 3 and 5 shows that most posts came from individuals to raise awareness. This was confirmed through a series of ANOVA and t-tests to determine whether there was a statistical difference between the means of each of these variables. Posts per tag were placed into summary tables, with each entry under the categories representing the number of posts that fit the description for an individual year. Table 3 shows the summary and results of an ANOVA test conducted to determine if there is a statistical difference between the means of the five author types. Since the F value of 8.7 is greater than the F crit of 3.26, the null hypothesis can be rejected and at least one of these means is different. To determine which of the means are different, a t-test (assuming different variances) was conducted between each of the categories. Table 4 shows the results of one t-test showing that the average number of posts by individuals and posts by medical services differed significantly, as the t Stat of 4.33 is greater than the t Critical two-tail of Table 3. Summary and ANOVA data for posts sorted by the author. SUMMARY Groups Count Sum Average Variance Posts Made by Individuals Posts Made by Media N/A Posts Made by NPO Posts Made by Medical Services Posts Made by Other ANOVA Source of Variation SS df MS F P-value F crit Between Groups Within Groups Total Table 4. t-test between posts made by individuals and those made by medical services. Posts Made by Individuals Posts Made by Medical Services Mean Variance Observations 5 4

28 Kumar 28 Hypothesized Mean Difference df 4 t Stat P(T<=t) one-tail t Critical one-tail P(T<=t) two-tail t Critical two-tail Similar tests were conducted between the other five possibilities: posts by individual to posts by non-profit organizations and other; posts by non-profit organizations to posts by medical services and other; posts by medical services to posts by other. The average number of posts by individuals was different to all other types, while there were no statistical differences between any pairs without individuals. Table 5 contains the results of an ANOVA test on the four different types of post. Since the F-value of 15.4 is greater than the F crit value of 3.28, the null hypothesis can be rejected and at least two of the averages are statistically different from one another. A series of t-tests were conducted between each possible pair to determine which of the averages were different. These tests showed that there was a difference in the number of posts made for awareness and all other tags (controversial, personal and other). It also found that that the average number of controversial posts was statistically significant from the other tags. Since the t-test was conducted to determine whether the observed difference is significant or not, the post counts can be used to determine which was the greatest and the least. Posts tagged awareness were the most common, and made up nearly 6 percent (436 posts) of the total, while controversial posts were the least common at just 2.2 percent (16 posts). Table 5. Summary and ANOVA data for posts sorted by the type of post. SUMMARY Groups Count Su m Average Variance

29 Kumar 29 Awareness Posts Controversial Posts Personal Posts Other Posts ANOVA Source of Variation SS df MS F P-value F crit Between Groups E Within Groups Total Table 6 contains an ANOVA test run on the five types of shared content. The F-value is once again greater than the F crit, which means that the observed averages are different. The average number of posts that shared other and news content was shown to be different from all options except for each other. There was no significant difference found between the means of posts that shared advocacy content and government material, but the observed difference between advocacy posts and scientific material was proven significant. There was no different between the means of government and scientific material. Table 6. Summary and ANOVA data for posts sorted by the type of shared content. SUMMARY Groups Count Sum Average Variance Advocacy Content Government Content News Content Science Content Other Content ANOVA Source of Variation SS df MS F P-value F crit Between Groups Within Groups

30 Kumar 3 Total Individually, these results convey that individuals made the most posts, mainly for awareness results. It also shows that the majority of posts with shared content provide other or news material. Scientific material was shared just 31 times in five years, making it the least frequently shared type of content. The fact that the majority of information, both in individual years and over the five-year period, comes from non-reliable sources directly corresponds to concerns raised by Moorhead et al. (213) and Antheunis et al. (213) in their studies of social media s effects on health. Despite the ability to share and access more information, the quality of information is often not very credible, and the fact that scientific articles made up just 6 percent of all the shared content supports their concerns. Moreover, Antheunis et al. (213) discovered that the most health professionals are active on LinkedIn and Twitter, not Facebook, while patients operate on Facebook. This disconnect was also evident within this study, as most of the authors were not health professionals, but ordinary individuals. Furthermore, Lyme is not endemic in all regions in which awareness posts were made. Awareness posts can be effective if the prevalence of Lyme disease is truly high in an area, like in southern Ontario. However, if they are made in places that are not at risk of Lyme, it can give readers an incorrect understanding of the risk. Particularly, there were awareness and personal posts made in provinces, such as Alberta and Saskatchewan, where Lyme is not pervasive. As a result, those who read and post awareness messages may believe that Lyme is in every province and that the risk is equal across the country. This can cause some tension, confusion and anxiety. For example, if an individual truly feels that they have Lyme disease, but are in a non-endemic area and are diagnosed negatively, they may turn to private American laboratories

31 Kumar 31 recommended by advocacy groups. This might be one explanation as to why commercial laboratories are testing many Canadians these days. As previously mentioned, many of these posts do not share scientific or medical articles to support their views or claims. Figure 7 illustrates one example of a post that uses a nonreputable source as a reference for a scientifically inaccurate statement. Table 2 shows that approximately 7 percent of posts reviewed had some form of shared content, but very few of these posts referenced government or scientific literature. The majority of shared content came from awareness posts. One concern is that a lot of awareness and what people are reading is not coming from authoritative sources, which can be concluded from both Figure 4 and Table 6. This is likely a reason misinformation persists greatly on this topic, and the lack of credible information shared could be an explanation for why many posts make statements that contest or contradict the approved Lyme disease practices, as can be seen in Figures 6 to 8 above. Moreover, news articles were very commonly shared, and the average number of posts that shared news was found to be statistically different from the average of all shared content except other. However, this could be problematic as journalists may be interpreting scientific literature incorrectly, be biased, or focus on a particular region in a way that does not make the article generalizable. One example is when awareness posts made in a non-endemic Lyme region share articles written in Lyme endemic province. The conditions are very different between the two places, so the article s content is not fully transferrable. Using an article telling people to be aware of Lyme in Ontario is not something that is fully applicable to a non-endemic region, as the risk of transmission is very different. Again, general Facebook users may not be considering these differences, and are likely to take the information provided at face value. As such, readers

32 Kumar 32 might feel as though they are in an endemic area and at risk even when they are not. This can also be a cause of differing perspectives and confusion between patients and physicians. Advocacy-related material was shared fairly frequently. As explained earlier, some advice offered by advocacy groups goes against official diagnostic and treatment policies. For instance, one website frequently shared was CanLyme, which looks extremely professional and is the first result to show up when Lyme disease is googled. It makes the following statement: Don t get discouraged if you get a negative diagnosis. Seek out a second, and even third, opinions if you must! (Canadian Lyme Disease Association, n.d.). This statement is concerning, as it confirms that the Canadian diagnostic practice is flawed for those who already have this preconceived notion, and starts to build a biased view for those who do not. This statement encourages people to not take their Canadian negative result as accurate, but to seek multiple opinions until they test positive. When information like this is shared widely over social media, it gives people the impression that currently accepted diagnostic standards are inadequate, and that a negative test cannot be trusted. This website also provides links to specific laboratories in the United States. Therefore, it is likely that seeing this content shared repeatedly on social media influences readers and makes them more likely to follow alternate, unofficial diagnostic procedures. When looking at each year by itself, many of the trends are similar to what is seen for the entire period. Again, individuals posting to raise awareness share the most content. This is expected, as individuals want readers to read the linked content for information regarding the disease. For example, of the 34 awareness posts in 212, 23, or roughly 68 percent, shared either news or advocacy content. Even though the actual number of posts increased in subsequent years, the general pattern of posts remained the same. Awareness posts by individuals remained

33 Kumar 33 popular, and they typically shared news, advocacy and/or other content. Importantly, scientific content remained low, which means that the vast majority of information that is easily accessible to the public comes from less authoritative sources. Furthermore, there are very few posts made by qualified professionals, such as medical service workers. Most individuals are likely nonexperts, and hold beliefs that are inconsistent with the scientific consensus. As explained above, this can lead to conflicting perspectives and opinions. Lastly, the fact that the majority of information, both in individual years and over the five-year period, comes from non-reliable sources directly corresponds to concerns raised by Moorhead et al. (213) and Antheunis et al. (213) in their studies of social media s effects on health. Moreover, Antheunis et al. (213) discovered that the most health professionals are active on LinkedIn and Twitter, not Facebook, while patients operate on Facebook. This disconnect was also evident within this study, as most of the authors were not health professionals. On the whole, it becomes clear that social media does play a role in shaping the public s perspectives, as can be seen just by comparing the type of posts made by location, and what type of content is primarily shared. Conclusion: The two-tier Lyme disease testing in Canada faces strong public scrutiny, and the danger of individuals receiving false-positives from unreliable commercial laboratories is growing. Examining what is shared on social media is a crucial element to understand when determining why there is so much debate over the diagnostic procedures in Canada. The spread of nonreputable sources of information regarding Lyme disease is likely the key reason. This study found that Facebook can be an important factor that influences how the general public views Lyme disease.

34 Kumar 34 One improvement to this study would be to broaden the tags for each post. Especially in later years, a significant quantity of shared content and posts fell into other, as all tags were predetermined. If more tags were generated, such as photos or fundraising, it would help to classify each post with increasing precision and examine whether novel patterns emerge. Moving forward, work could be done to examine the science behind each post made regarding Lyme disease, as not all posts shared content. This would allow for a better understanding of whether the general population is accurate in what they promote. Special attention could be given to controversial posts. Each could be analyzed scientifically to understand where the statements are coming from and whether they are based in fact or not. An alternative approach to this study would be to to examine all posts in Canada within a year, to see when the most posts are made and whether it corresponds with the tick season. Additionally, it might be beneficial to examine Twitter posts on Lyme disease, and do a comparative study to see whether the patterns observed are similar to the ones described for Facebook. This would allow for a broader view of information across multiple social media platforms. With climate change set to increase the range for most vectors, including ticks, the need to promote positive awareness and have good diagnostic practices for vector-borne diseases is a must. These already make up a considerable fraction of the global disease burden, and have numerous impacts on societies, and this is predicted to get worse. All in all, it is important to understand and be prepared for all vector-borne diseases, including Lyme disease. Acknowledgements: I would like to thank Dr. Yiannakoulias for giving me the opportunity to take on this project, and for his guidance and support. This would not have been possible without all of his time, advice and assistance.

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36 Kumar 36 Hu, L. (215, March 2). Diagnosis of Lyme disease. Retrieved September 29, 216, from International Lyme and Associated Disease Society. (n.d.). Retrieved September 19, 216, from Koffi, J., Lindsay, R., and Ogden, N. (216). Surveillance for Lyme Disease in Canada, Online Journal of Public Health Informatics, 8(1). doi:1.521/ojphi.v8i Lyme disease. (216). Retrieved November 28, 216, from Lyme disease. (216). Retrieved September 19, 216, from McMichael, A. J., Woodruff, R. E., and Hales, S. (26). Climate change and human health: Present and future risks. The Lancet, 367(9513), doi:1.116/s (6) Mead, P. S. (215). Epidemiology of Lyme Disease. Infectious Diseases Clinics of North America, 29(2), Moore, A., Nelson, C., Molins, C., Mead, P., and Schriefer, M. (216). Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States. Emerg. Infect. Dis. Emerging Infectious Diseases, 22(7). doi:1.321/ Moorhead, S. A., Hazlett, D. E., Harrison, L., Carroll, J. K., Irwin, A., & Hoving, C. (213). A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. Journal of Medical Internet Research, 15(4), e85. Richter, D., Matuschka, F. R., Spielman, A., & Mahadevan, L. (213, December). How ticks get under your skin: insertion mechanics of the feeding apparatus of Ixodes ricinus ticks. In Proc. R. Soc. B (Vol. 28, No. 1773, p ). The Royal Society. Sigal, L. H. (199). Summary of the first 1 patients seen at a Lyme disease referral center. The American Journal of Medicine, 88(6), doi:1.116/2-9343(9)952-n

37 Reported Number of Cases Kumar 37 Appendix A Figure 1. Risk areas in Canada for Lyme disease (Health Canada, 216). Reported Number of Lyme Disease Cases in Canada between 29 and Year Figure 2. Reported number of Lyme diseases cases in Canada between 29 and 215 (Health Canada, 216).