As more individuals experience tinnitus, some researchers have labeled the condition a “global burden” (J Formos Med Assoc. 2016 Mar;115(3):139). As such, social awareness of the condition has spread, in no small part due to the internet and social media. About 75 percent of American adults use the internet, including various social media platforms, to learn about health conditions like tinnitus (PEW, 2014 https://pewrsr.ch/2FgioCJ). The World Health Organization has asserted the importance of modern social media platforms, particularly in their ability to provide more people with instant and easy access to health-related information (Bull World Health Organ. 2009 Aug;87(8):566). Social media also allow users to discuss health conditions (like tinnitus) and build relationships with others who share symptoms or experiences (Am J Audiol. 2017 Mar 1;26(1):1; J Neurosurg Pediatr. 2017 Aug;20(2):119). These virtual platforms can encourage communication about and management of disorders, thereby promoting confidence and empowerment.
However, the lack of adequate gate-keeping mechanisms on social media may pose a threat to information accuracy. Misinformation can be particularly dangerous to people who are distressed by their condition, like tinnitus, and desperate to find an effective treatment (J Acad Librariansh. 2015;41:583). In fact, billions of dollars are spent each year on items marketed online as “tinnitus cures” (Otol Neurotol. 2016 Aug;37(7):991).
If tinnitus-related information posted online is systematically analyzed, audiologists and other hearing health care professionals can be better equipped to correct possible patient misinformation. As such, this study assessed the prevalence, quality, and trends of tinnitus-related information across three popular social media platforms: Facebook, Twitter, and YouTube (AJA. 2018. doi:10.1044/2018_AJA-18-0033).
The study was approved by the Institutional Review Board of Hofstra University. A comprehensive evaluation of three social media platforms was performed by searching the keywords ”tinnitus” and “ringing in the ears” on Facebook (pages and groups), Twitter (accounts), and YouTube (videos). These platforms were selected based on present popularity and ease of quantifiable data (PEW, 2018 https://pewrsr.ch/2FkijOg).
Search results were examined by two reviewers and included in the investigation only if they were in English, contained the keyword “tinnitus” within the title and/or description, and relevant to the audiological condition of tinnitus. Included items also had to meet the following criteria: 10 or more “likes” and five or more posts for Facebook pages; 10 or more members for Facebook groups; 10 or more followers and five or more tweets for Twitter accounts; and 100 or more views for YouTube videos. Public and closed Facebook groups were included and categorized based on page description. Among the studied YouTube videos, the first 100 that came up by each sorting option (i.e., relevance, view count, and rating) were assessed.
The results for each platform were quantified based on various social media metrics, including likes, members, followers, and views. All results were sorted into the following categories based on primary functionality: (1) fundraising, (2) information sharing, (3) misinformation, (4) personal story, (5) promotion of a product, (6) service provider/institution, and (7) support group. Two additional categories were created for YouTube: (8) tinnitus assessment, and (9) tinnitus management. It should be noted that the authors defined misinformation as any shared information that is currently considered untrue (e.g., miracle pills), lacking peer-reviewed evidence (e.g., acupuncture), or uninvestigated at the time of the study.
Of the 1,459 search result items that were assessed, 624 met the inclusion criteria (49.2% Facebook pages, 36.5% YouTube videos, 8.4% Twitter accounts, and 5.9% Facebook groups). Figure 1 shows the breakdown of the different information categories in each of the studied social media platform. The highest levels of activity within the tinnitus community were found on Facebook pages (n = 307), which amassed a total of 214,184 likes and a mean of 701 likes. The most prevalent categories were misinformation (42.7% of pages; 75,581 total likes; 577 mean likes), service provider (27.4% of pages; 45,749 total likes; 545 mean likes), and information sharing (14.7% of pages; 33,080 total likes; 735 mean likes).
A total of 37 Facebook groups were included in the study, totaling 45,664 members and a mean of 1,234 members. Of these, nine groups were public and 28 were closed. Public groups totaled 712 members (mean = 79) and the two most common categories were misinformation (44.44% of public groups; 123 total members; 30.75 mean members) and support group (33.3% of public groups; 360 total members; 120 mean members). Closed groups amassed 44,952 members (mean = 1,605). The three most common categories were support group (67.85% of closed groups; 38,266 total members; 2,014 mean members), information sharing (14.29% of closed groups; 4,433 total members; 1,108 mean members), and service provider (10.71% of closed groups; 2,206 total members; 735 mean members).
For YouTube, 228 videos were examined after removing irrelevant and overlapping videos across sorting options. These videos amassed a total of 41,296,486 views, 170,707 likes, 15,479 dislikes, and 31,798 comments, and had a total duration of 340:29:12 (hh:mm:ss). Video upload dates ranged from July 2006 to July 2017 (when data collection took place) and duration ranged from 00:00:07 to 13:31:19. The three most common categories of videos were management, information sharing, and misinformation. The amount of misinformation varied by sorting option, with the most misinformation found when sorting by relevance (30.9%) and the least when sorting by rating (15.9%). Results for YouTube videos are summarized in Table 1.
Fifty-two tinnitus-related Twitter accounts were analyzed. These accounts had a total of 155,167 followers (mean = 2,984) and produced a total of 33,932 tweets (mean = 6,499). The three most common categories were misinformation (34.6% of accounts; 28,042 total followers, 1,558 mean followers), service provider (25% of accounts; 96,959 total followers; 7,458 mean followers), and information sharing (25% of accounts; 23,376 total followers; 1,798 mean followers).
Overall, the studied information varied in authenticity. Social media users who search for tinnitus-related information can get information about the condition, locate medical professionals, find peer support, and advocate for increased awareness of tinnitus.
The findings of this study suggest that social media platforms offer a multitude of tinnitus-related information that can help affected individuals cope with the condition. The highest rates of activity were found on Facebook, which is currently the world's most utilized social media platform (J Neurosurg Pediatr. 2017). YouTube was a unique platform in that tinnitus management videos (the most popular category) offered potential self-help and “do-it-yourself” relief options. Additionally, the study authors noted that some of the most pertinent and accurate videos resulted when sorting YouTube videos by rating, rather than YouTube's default sorting option of relevance.
Substantial amounts of misinformation were found throughout all investigated platforms. Of the six social media metrics assessed, five had misinformation as one of the top categories. Although not all misinformation was spread maliciously, it became clear that social media may attract those with malevolent intentions. For example, several products and supplements were found across platforms that marketed themselves as tinnitus cures, some being sold for hundreds of dollars each. Many of these products have been clinically investigated and determined to offer no benefits besides a possible placebo effect (J Am Acad Audiol. 2014 Jan;25(1):106). Further investigation is needed to determine how to flag search results or products promoting misinformation on social media.
This study had some limitations, many of which are unavoidable and inherent to social media, including potentially targeting search results based on IP addresses and personal accounts, the evolving nature of social media, and the possibility that the keywords searched may not have been all-inclusive. Future investigations should consider assessing micro-level trends in social media use and the susceptibility of the tinnitus community to online misinformation. Nonetheless, the results of this study can help audiologists and other hearing health professionals understand the current online portrayal of tinnitus. Clinicians should be prepared to combat the significant online tinnitus-related misinformation and offer patients correct information to help them effectively manage their condition.