512220 research-article2014
JHI0010.1177/1460458213512220Health Informatics JournalMadathil et al.
Article
Healthcare information on YouTube: A systematic review
Health Informatics Journal 0(0) 1–22 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1460458213512220 jhi.sagepub.com
Kapil Chalil Madathil, A Joy Rivera-Rodriguez, Joel S Greenstein and Anand K Gramopadhye Clemson University, USA
Abstract This article reviews the peer-reviewed literature addressing the healthcare information available on YouTube. Inclusion and exclusion criteria were determined, and the online databases PubMed and Web of Knowledge were searched using the search phrases: (1) YouTube* AND Health* and (2) YouTube* AND Healthcare*. In all, 18 articles were reviewed, with the results suggesting that (1) YouTube is increasingly being used as a platform for disseminating health information; (2) content and frame analysis were the primary techniques employed by researchers to analyze the characteristics of this information; (3) YouTube contains misleading information, primarily anecdotal, that contradicts the reference standards and the probability of a lay user finding such content is relatively high; (4) the retrieval of relevant videos is dependent on the search term used; and (5) videos from government organizations and professional associations contained trustworthy and high-quality information. YouTube is used as a medium for promoting unscientific therapies and drugs that are yet to be approved by the appropriate agencies and has the potential to change the beliefs of patients concerning controversial topics such as vaccinations. This review recognizes the need to design interventions to enable consumers to critically assimilate the information posted on YouTube with more authoritative information sources to make effective healthcare decisions.
Keywords consumer health information, e-health, health information on the Web, healthcare information on YouTube, video-sharing sites
Introduction Video-sharing sites are popular sources of information. YouTube, the most well known of these sites, exceeds 2 billion views per day,1 with a new video being uploaded on average every minute and an average user spending at least 15 min a day on the site.2 A recent Health Information Corresponding author: A Joy Rivera-Rodriguez, Department of Industrial Engineering, Clemson University, 130-C Freeman Hall, Clemson, SC 29634, USA. Email: [email protected]
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National Trends Survey (HINTS) reports a substantial increase in the use of the Internet for retrieving health information. Recent surveys have found that 8 of 10 Internet users accessed health information online.3,4 Patients with chronic illnesses in particular are increasingly relying on Internet-based resources to manage their conditions.5 According to surveys conducted by the Pew Research Center, decisions made by 75 percent of such patients on how to treat their condition were influenced by the knowledge acquired through online health information searches.5–8 These results suggest that a platform like YouTube has the potential to serve as an important vehicle for sharing and disseminating timely health-related information, both in its function as a repository of videos and as a social networking interface where users can interact and socialize. In fact, this interaction may increase its influence on healthcare decisions, extending its benefits beyond being a diagnostic aid or an educational tool for healthcare conditions and their management to being a source for information sharing among patients coping with illness.9,43 However, healthcare providers and government agencies alike have expressed concern about the veracity and quality of the information available on this platform,10–13 primarily for two reasons: increased use of YouTube to post anecdotal information and more importantly, its minimal guidelines and interventions regulating the content of the material uploaded on the site. These issues raise questions about the trustworthiness of this information source and the risk of disseminating misleading information. As a result, government agencies and researchers are currently examining the use of social media as a platform for communicating health information. This article reviews the peer-reviewed literature investigating the content and veracity of healthcare information available on YouTube. It discusses the implications of these studies and provides suggestions for future research to support the dissemination of reliable information to healthcare consumers.
Method Inclusion and exclusion criteria The inclusion criteria for the studies included in this review were as follows: (1) the domain of the article was related to health care; (2) the primary focus of the article was to understand the type of healthcare information available on YouTube; (3) the article was published in a peer-reviewed journal; (4) the article detailed the methodology of the study reported; and (5) the article was available in English. Articles were excluded if they contained only conceptual or theoretical discussions on the potential use of YouTube and similar social media for healthcare information dissemination.
Search strategy The online databases Web of Knowledge, an academic citation and indexing service, and PubMed, the MEDLINE database of references and abstracts on life sciences and biomedical topics, were searched using the following search phrases: (1) YouTube* AND Health* and (2) YouTube* AND Healthcare*. In this review, the term health care was used to include studies that focus on procedures and methods that could be used by a healthcare consumer to maintain and improve their physical and mental health. The initial search was conducted on the second week of October 2012, and a subsequent search was conducted on the third week of November 2012. These searches yielded 94 articles from the Web of Knowledge database and 77 articles from PubMed. The initial screening was done by the first author (K.C.M.). The second author (A.J.R-R.)
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Figure 1. Selection process for study inclusion.
separately reviewed the screened articles to ensure that the articles met the inclusion criteria. The discrepancies were discussed by the two researchers until a consensus was met. In all, 31 articles met the inclusion criteria, and a search of their references yielded 2 additional articles appropriate for this review. Among the 33 articles subsequently screened for content, 10 did not meet the inclusion criteria. Of the 23 articles remaining, 2 analyzed the linguistic features and social support mechanisms of the videos and user comments, and another focused on identifying the personal health information present on YouTube. These articles were excluded due to their narrow scope. Two studies investigating smoking and smoking cessation on YouTube which focused on understanding the influence of camouflaged advertisements supporting the use of tobacco were also excluded. Thus, in total, 18 articles were included in this review. The selection process for study inclusion is shown in Figure 1.
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Results Of the 18 articles reviewed, 11 were from the United States, 5 from Europe, 1 from Canada, and 1 from India. A total of 11 studies focused on the informational content available for various health conditions, 5 focused on the portrayal of controversial medical issues such as vaccination and organ donation, 1 focused on the quality of information, and 1 focused on the portrayal of dentistry. Table 1 summarizes the key findings of the 18 articles reviewed.
Methodological characteristics and analytical techniques YouTube offers four ways of sorting search results: (1) relevance, (2) upload date, (3) view count, and (4) rating. Of the 18 studies reviewed here, 14 (77.8%) sorted their results based on relevance, 1 (5%) on view count, and 2 (11.1%) employed both relevance and view count; the remaining study27 employed a snowball technique, viewing a video, followed by viewing those suggested by YouTube as being relevant to emulate a typical strategy followed by a typical user. All studies subsequently applied content analysis by reviewing the videos and coding them according to view count, clip length, the source of the video, comments, and viewer ratings. Table 2 shows these elements extracted from YouTube by the individual studies. As Table 2 indicates, view count and clip length were most frequently extracted for analysis, with 87 percent of the studies using view count and 57 percent using clip length to compare the videos. Two of the 18 studies supplemented this content analysis with framing analysis,16,25 a method that analyzes the frames in the media from an affective and a cognitive perspective. One of these studies focused on the portrayal of organ donation on YouTube16 and the second on obesity.25 For example, in the study examining obesity, framing analysis was used to examine the videos for causal claims and solutions pertaining to obesity. This involved analyzing the frames of the video for behavioral, biological, and systematic causal claims and treatment options. In 89 percent of the 18 studies reviewed, two or more reviewers analyzed the content and subsequently computed the level of inter-rater agreement (IRA). The IRA ranged from 0.6 to 1.00. The specific analytical techniques used in the studies are seen in Table 3 below. Seven (38.8%) studies evaluated the video content by categorizing its tone as positive, negative, or neutral/ambiguous based on the portrayal of the issue/condition.9,12,14,15,18,24,29 Generally, videos were categorized as positive if their approach encouraged consumers to seek an intervention, and negative if they discouraged viewers from doing so. The study on organ donation by Tian16 applied this analysis to the text comments, categorizing the videos studied based on the poster’s behavioral intention. Nine (50%) studies analyzed the content based on the source.10,12,15–18,25,26,28 The primary source types used were organizations, including governmental agencies, non-profit, and for-profit organizations; independent users; and news agencies. Two (11.1%) studies15,25 analyzed the content focusing on videos from the media; the categories included podcasts, TV news coverage, TV documentaries, TV commercials, and university lectures. Five (27.7%) studies20,21,24,26,28 categorized the content based on the intended audience of the video, with patients, care givers, and healthcare professionals being the primary types. In all, 16 (88.89%) studies9,10,12,14,17–28 assessed the credibility and veracity of the information in the video by assessing its quality in relation to that needed for informed healthcare decisionmaking. These studies focused on understanding how this information compared to reference standards. Finally, 5 (27.78%) studies14,16,21,23,25,27 used inductive coding, meaning they categorized the information based on the general themes identified while conducting the analysis.
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Searched using the keywords vaccination and immunization.
To understand how immunization information is portrayed on YouTube.
To understand how HPV is portrayed on YouTube.
Keelan et al.14
Ache and Wallace15
Searched using the keywords Gardasil, cervical cancer vaccination, and HPV vaccination.
Search criteria used by the authors
Objective
Author
Table 1. Main results of reviewed studies.
146
153
Number of videos analyzed
Videos were categorized as TV news coverage, TV commercials, TV documentary, university lecture/educational, or YouTube member/ subscriber-created content. Comments categorized as positive, negative, or neutral regarding HPV vaccination. Analysis conducted to understand the relationship between the number of views and user-posted comments.
Categorized the videos as negative, positive, or ambiguous based on the portrayal of the immunization information. The scientific claims made by the videos were classified as substantiates or contradicts standard immunization guide.
Design method
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• 75% of the video clips portrayed HPV vaccination positively and 25.3% portrayed it negatively. • 32% of the video clips generated at least one posted comment. • 61% of the user-generated content portrayed HPV negatively. • Video clips portraying HPV vaccination negatively were significantly longer than those carrying a positive message.
• 48% of the videos portrayed a positive message, 32% negative, and 20% ambiguous. • Negative videos had a higher number of views and higher mean ratings. • 50% of the videos posted did not support immunization. • Information in negative videos often contradicted the reference standard.
Key findings
Chalil Madathil et al. 5
Search criteria used by the authors
Searched using the keyword organ donation.
Searched using the keywords swine flu, H1N1 influenza, and influenza in June 2009 and looked for videos posted over the past 3 months.
Objective
To examine YouTube content on organ donation and audience response.
To understand the use of YouTube as an information dissemination mechanism by organizations, independent users, and news agencies during the initial phase of the H1N1 outbreak.
Author
Tian16
Pandey et al.17
Table 1. (Continued)
142
355
Number of videos analyzed
Two researchers categorized the videos as useful, misleading, or news updates based on their characteristics. Videos were also categorized based on the source: CDC, the UN and WHO, the Red Cross, news agencies, and independent users.
The content of videos was classified as positive, negative, or neutral based on the tone of the post. The comments were coded as positive, negative, or neutral and further analyzed to understand if the viewer intended to sign a donor card after viewing the video or if the viewer had signed one.
Design method
• 61% of videos had useful information about H1N1. • 23% of the videos were misleading. • Total viewership share of useful videos was 71% and that of misleading videos 18%. • 12% of the useful videos were from the CDC, with a viewership share of 47%. • No differences in viewership/day for useful and misleading videos. • The misleading videos portrayed messages against vaccination and H1N1 as a manmade conspiracy.
• 96% of the organ donation videos had a positive valence. • 35% were produced by individuals, 34% by non-profit organizations, and 7% were television programs featuring interviews with representatives from non-profit organizations. • Kidney and liver donations were the organs most frequently discussed. • The organ donation process was the most discussed item. • 90% of the comments had a positive valence.
Key findings
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Objective
To understand the quality of prostate cancer–related information on YouTube and to investigate the presence of bias against screening and treatment.
To understand the content and quality of CPR information available on YouTube.
Author
Steinberg et al.18
Murugiah et al.19
Table 1. (Continued)
Searched using keywords CPR, Cardiopulmonary resuscitation, BLS and Basic life support.
Three sets of searches. First set included the search terms prostate-specific antigen, prostate cancer and PSA and prostate cancer and diagnosis. The second set used the search terms prostate cancer and radiotherapy, and prostate and radiotherapy. The third set involved prostatectomy, prostate cancer and surgery, and robot and prostate cancer.
Search criteria used by the authors
52
51 videos in total analyzed, including 14 PSA videos, 5 radiotherapy videos, and 32 surgery videos.
Number of videos analyzed
Two researchers categorized the source of videos as a private agency, guideline bodies such as the Red Cross, emergency medical technicians,
Two urology residents analyzed the videos for informational and scientific content, rating them as excellent, fair, and poor. In addition classified, the bias as for, against, or neutral/ unclear.
Design method
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• 69% of the videos illustrated the correct compression–ventilation ratio. • 64% gave information on the location of chest compressions. • 35% provided information on the rate of chest compressions.
• 73% of the videos had fair to poor information content. • More than two-thirds of the videos were in favor of PSA testing or treatment of prostate cancer. • Surgical videos depicted the technical aspects of a prostatectomy. • Advertisements supported robotic prostatectomy with minimal information about the technology. • Videos on PSA testing were heavily biased, with no videos arguing against PSA screening for prostate cancer. • YouTube may not be a reliable source of information for consumers seeking information to better understand the screening for and management of prostate cancer.
Key findings
Chalil Madathil et al. 7
To understand the content and bias of orthodontic videos on YouTube. In addition, to evaluate the changes in the attitude of a nondentist adult and an adolescent toward orthodontics.
To understand the quality and veracity of videos on infantile spasms (childhood epileptic encephalopathy) to investigate if YouTube could
Fat et al.9
Objective
Knosel and Jung20
Author
Table 1. (Continued)
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Searched using the keywords infantile spasm, spasm, epileptic spasm, and West syndrome.
Searched using the keyword orthodontist OR orthodontic OR orthodontics OR braces.
Search criteria used by the authors
28
60
Number of videos analyzed
Two researchers analyzed the videos and rated their technical quality, diagnosis of infantile spasms, and the
• 60%–64% of the videos showcased infantile spasms. • 71% of the videos portrayed good clinical examples of infantile spasms. • The search term played a key role in finding a good quality video.
• The quality of information provided in the videos was low; the majority were proorthodontics. • A majority of the videos were user-generated content. • The probability of a video being an advertisement was high when sorted by relevance.
• 40% gave information on the depth of chest compressions. • Videos omitted several important steps. Several vital steps were depicted incorrectly. • The best videos were not the most viewed ones.
CPR instructors and physicians, individuals with unspecified credentials and news programs. The content of the videos was ranked on a scale from 0 to 8, based on the accuracy of demonstration. Videos were analyzed by an orthodontist, a non-dentist adult, and an adolescent with no history of orthodontic treatment. The videos scored from 1 to 10 based on the information available on orthodontics classified based on the intention of the video, its source, and the presence of bias (whether orthodontics was portrayed positively or negatively).
Key findings
Design method
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Searched using the keywords music therapy and music therapy session
Searched using keywords Dystonia, Parkinson’s, chorea, myoclonus, tics, and tremor.
To understand the content on movement disorders on YouTube.
Stamelou et al.22
Search criteria used by the authors
To understand the informational content of music therapy-related videos on YouTube.
be used as an educational platform for both parents and medical staff.
Objective
Gooding and Gregory21
Author
Table 1. (Continued)
29
32
Number of videos analyzed
Videos of patients purported to have a movement disorder were analyzed to understand if the disorder was psychogenic (disorders not related to a medical disorder, usually associated with psychological factors) or organic (disorder caused by a detectable physiological change in an organ).
The videos were analyzed using a rubric designed to evaluate therapy specific information. In addition, the top five videos found when sorted by number of views were further analyzed for their conformance to the professional level of practice competencies suggested by the AMTA.
potential of the video to be used as a teaching resource.
Design method
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• 66% were psychogenic and 34% were organic. • 53% recommended treatment for a psychogenic movement disorder and 20% recommended treatment for an organic movement disorder. • Treatment recommendations ranged from the use of immunosuppressive agents to the use of craniosacral massage and herbal treatments. • The key finding was that the information was misleading, providing inaccurate depictions of the disease and its treatment.
• 37% of the videos had sessions with older adults; 33% were videos for special populations, and 15% were medical music therapy sessions while 60% of the videos were documentaries produced by educational institutions, organizations, and clinics. • 20% of the top videos fell short of the requirements mandated by the AMTA. • None of the video clips had information on accreditation.
• Educating patients on search strategies and selection practices is vital to ensure the veracity and quality of information.
Key findings
Chalil Madathil et al. 9
Search criteria used by the authors
Searched all sites using the keyword incontinence. The initial 30 results analyzed further.
Searched using keyword dentist OR dentists OR dentist’s OR dental OR dentistry.
Searched using the keywords Obesity and Obese
Objective
To understand the availability, quality, and variety of urinary incontinence– related content on YouTube, Facebook, and Twitter.
To understand the informational value, source, and bias of dentistry-related videos on YouTube.
To understand the portrayal of obesity in obesity-related videos.
Author
Sajadi and Goldman23
Knosel and Jung24
Yoo and Kim25
Table 1. (Continued)
417 videos analyzed. Every fifth video from the search results was selected for analysis.
120 videos analyzed, including the first set of 30 videos when sorted by relevance and the most viewed under the system-generated filter categories All and Education.
30
Number of videos analyzed
Videos were analyzed by two researchers and classified as TV news coverage, public service announcement, excerpt from TV documentary, excerpt from entertainment, user-generated content, podcast, and others. In addition, each media frame was analyzed and classified based
Two researchers analyzed the videos using a questionnaire and ranked them on a scale from 1 to 10 based on how they portrayed dentistry. The intention, credibility, and the presence of bias also evaluated.
Videos were analyzed for informative content on incontinence and categorized based on the source—healthcare providers, organizations, patients, and commercial videos.
Design method
• 37% were user-generated content, 21% were television news, and 15% were public service announcements. • 59% made causal claims about obesity, with 74% mentioning behavioral causes followed by systemic and biological causes. • Consuming unhealthy food and a sedentary lifestyle were portrayed as the major causes of obesity.
• The title of the video and the number of views did not have any relationship with the informational value of the video. • The primary aim was entertainment, followed by advertisement and education. • The videos under the category “Education” were found to be more than the videos available using the category “All.”
• 45% of the videos were informative. • 64% were from healthcare providers or organizations. • Of the 12 commercial videos, 92% were advertisements and 8% were for surgical procedures for incontinence.
Key findings
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To understand the portrayal of HPV vaccines with emphasis on their source and tone. To investigate the relationship between the source and the tone of the video.
To understand the accuracy of information available on AMI.
Pant et al.26
Objective
Briones et al.12
Author
Table 1. (Continued)
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Searched using the terms acute myocardial infarction, heart attack, acute coronary syndrome, and STelevation myocardial infarction.
Searched using the terms HPV vaccine, HPV vaccination, HPV immunization, human papilloma virus vaccine, human papilloma virus immunization, Gardasil, and Cervarix. The search results sorted based on relevance.
Search criteria used by the authors
104
172
Number of videos analyzed
Videos were classified as personal experience, news reports, professional groups, pharmaceutical companies, lectures from medical institutions, and other media.
(Continued)
• Videos from professional societies and lectures were longer. • Only 6% featured the different aspects of myocardial infarction; these videos were among the least viewed.
• 36% were from news sources, 13% were consumer-generated, 9% were from medical centers, 9% were from advocacy groups, 8% were from non-profit organizations, 4% were from pharmaceutical companies, 2% were from governmental agencies, and 1% from a professional association. • 52% had a negative tone and 33% a positive tone. • Videos that disapproved of the HPV vaccine were more liked than those that approved its use. • No significant relationship was found between the source and tone.
• Behavioral changes were suggested as the most common treatment.
on its portrayal of the causal factors of obesity (behavioral, biological, and systemic). The treatment options provided in the video were also analyzed. The researchers employed content analysis and coded the characteristics of the video, with a particular emphasis on the tone of the message and on the content.
Key findings
Design method
Chalil Madathil et al. 11
Singh et al.10
Author
To understand the quality and veracity of information on rheumatoid arthritis.
Objective
Table 1. (Continued)
Searched using the term Rheumatoid Arthritis.
Search criteria used by the authors
102
Number of videos analyzed
• 30% of the videos were misleading. • The average reliability score for the useful videos was 3.2. • 73.4% were advertisements. • Videos from university channels and professional organizations disseminated useful information. • No significant differences in the viewership/day between useful and misleading information.
• Only 17% of the videos emphasized preventive aspects, the majority being advertisements from companies. • 23% provided information for patients and 31% for healthcare providers. • Information available on YouTube on myocardial infarction is misleading and often not regulated.
All videos were analyzed for the following items: The depiction of the pathophysiology of the disease, including its signs and symptoms The measures to be taken in case of positive AMI laboratory tests and preventive measures with an emphasis on lifestyle management The treatments and the complications associated with the disease. Two researchers analyzed the information and classified it as useful or misleading, rating the quality on a 1–5 scale, with 5 being excellent. Videos categorized as useful were further analyzed for the veracity and reliability of the content.
Key findings
Design method
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To understand the type of information available on YouTube on pelvic floor muscle exercise.
To understand the information available on YouTube pertaining to rhabdomyosarcoma and soft-tissue sarcomas, common in children.
Stephen and Cumming27
Clerici et al.28
Searched using the terms pediatric soft-tissue sarcoma, rhabdomyosarcoma, and soft-tissue sarcoma in children.
Searched using the term pelvic floor exercise.
Search criteria used by the authors
149
22
Number of videos analyzed
The videos were classified based on the source and the type of the content. They were categorized as useful, misleading, personal experience, and not pertinent.
The researchers searched and analyzed the results using the snowball technique to simulate real-world use. Each video underwent content analysis, with the characteristics of each being recorded in three stages over a 7-month period.
Design method
• Only 1 video had complete and adequate information. • 1 video had misleading information. • Only 16% of the videos depicted useful content. • 83% of the videos were personal experiences. • Videos depicting a patient story recorded a higher number of views than those talking about the medical and treatment aspects of the disease.
• The age of the audience ranged from 35 to 64 years. • Music was used as background in 36% of the clips.
Key findings
HPV: human papillomavirus; CPR: cardiopulmonary resuscitation; AMI: acute myocardial infarction; CDC: Centers for Disease Control and Prevention; UN: United Nations; WHO; World Health Organization; AMTA: American Music Therapy Association; PSA: prostate-specific antigen.
Objective
Author
Table 1. (Continued)
Chalil Madathil et al. 13
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Clerici et al.28
Stephen and Cumming27
Singh et
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Briones et al.12
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Yoo and Kim25
Pant et al.26
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Knosel et al.24
Sajadi and
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Stamelou et al.22
Goldman23
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Gooding and Gregory21
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Fat et
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Knosel and
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Jung20
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Murugiah et
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Steinberg et
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Source Comments Viewer Country Upload Title Description Web page Number of Original Age/gender rating of origin date of video URL subscribers or repost of audience
al.18
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Ache and Wallace15
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Keelan et al.14
Tian16
View count
Clip length
Study
Table 2. Methodological elements.
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Steinberg et al.18
Murugiah et al.19
Knosel and Jung20
Fat et al.9
Gooding and Gregory21
Stamelou et al.22
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al.26
Singh et al.10
Clerici et al.28
Stephen and Cumming27
Pant et
Briones et
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Kim25
Knosel et
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Sajadi and Goldman23 • •
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Tian16
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Based on information quality
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Based on media presentation
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Based on intention/ intended audience
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Wallace15
Keelan et al.14
Based on source
Based on tone of the videos/ comments (bias)
Content analysis
Framing analysis
Content categorization
Analysis techniques
Calculated level of inter-rater agreement
Study
Table 3. Analytical techniques and resulting categories.
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Based on themes generated during content analysis
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Characteristics of information available on YouTube The 18 articles reviewed fell into two primary categories: those focusing on specific healthcare issues/conditions and those investigating health care–related videos related to diagnosis, treatment, and disease management procedures. Studies focusing a health issue. The five studies focusing on specific healthcare concerns analyzed videos on vaccinations (n = 3), organ donation (n = 1), and obesity (n = 1). Keelan et al.14 found that 32 percent of the videos they analyzed were not supportive of immunization and that these videos received a higher mean star rating and more views than the supportive ones.14 More importantly, these videos contained information that contradicted the reference standards. Ache and Wallace15 found that 25.3 percent of the videos they analyzed were not supportive of the vaccination for human papillomavirus (HPV).15 The number of views for videos supporting and those not supporting this vaccine were similar, suggesting that the chance of an information seeker finding contradictory information is high, a problem compounded by the view comments, which contained biased and inaccurate information. Briones et al.’s12 study focusing on the sources of HPV videos suggested that the majority originated from news sources, followed by user- and organizationgenerated content. However, the results of this study, conducted 3 years after that of Ache and Wallace,15 found that 51.7 percent of the videos expressed negative attitude toward the HPV vaccine. This study did not find any significant differences between the source and the number of views and the like/dislike rating. Videos with a negative tone and those that disapproved of the vaccine were more liked than the ones that approved the vaccine. In contrast, Tian16 found that the healthcare issue of organ donation was in general positively portrayed: 95.8 percent of the videos he analyzed portrayed it positively and 2.5 percent portrayed it negatively. In all, 92 percent of the comments analyzed were positive and 5.7 percent were negative. The negative video portrayals and viewer comments focused on the corruption involved with this procedure, the high cost of the process, and the resulting unfair advantage for the wealthy. One potential explanation for the high incidence of positive videos was that a large number of them were posted by entities promoting organ donation. Specifically, 34.4 percent of the videos were generated by organizations, 6.5 percent by TV interviews, and 35.2 percent by individuals and students who support organ donation. Yoo and Kim25 investigated the portrayal of obesity, finding that 36.5 percent (n = 417) of the videos were user-generated, 20.6 percent TV news stories, and 14.9 percent public service announcements. More than half, 59 percent, analyzed the causes of obesity, with the primary ones being behavioral causes (74%) followed by systematic (36.6%) and biological/genetic (17.5%) causes. The solution options found exhibited a similar trend, advocating behavioral changes, followed by systematic solutions and medical treatment. Studies investigating videos related to diagnosis, treatment, and disease management procedures. In all, 9 of the articles reviewed focused on assessing the veracity of the information in the videos researched, which included a range of health problems and one exploring music therapy. For example, Steinberg et al.18 examined the portrayal of prostate cancer and found that the informational content was fair or poor in 73 percent (n = 51) of the videos with no significant differences related to video content or the number of views. Though they found support for prostate-specific antigen (PSA) testing, surgery, or radiotherapy in 69 percent of the videos, the informational content was of moderate quality. Murugiah et al.’s19 study, focusing on videos related to cardiopulmonary resuscitation (CPR), found that 88.5 percent (n = 52) of the videos were meant for lay rescuers and the remaining for
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healthcare professionals. In all, 48 percent of total videos analyzed came from people with unknown credentials. Though agencies such as the American Heart Association had YouTube channels, they provided few videos showcasing the CPR technique. One of the important findings of this study was that several videos skipped important steps in the CPR process and performed some steps incorrectly. In addition, similar to the study by Shepherd29, no significant differences were found in the number of views per day between the inaccurate and accurate CPR demonstration videos. Stamelou et al.’s22 studies on the information quality of YouTube content on movement disorders found a trend similar to the findings of Shepherd29 and Murugiah et al.19 suggesting that the information was misleading, providing inaccurate depictions of movement disorder conditions and their treatment. This situation was also observed in videos on incontinence, with Sajadi and Goldman23 finding under half (46%) of the videos contained useful information. Of this useful information, 64 percent came from healthcare professionals or organizations. This study also found a proliferation of advertisements from for-profit companies, with 92 percent of incontinence-related videos promoting incontinence briefs or pads. In contrast, the content analysis of the videos on infantile spasms conducted by Fat et al.9 suggested that 56 percent of the videos depicted high-quality videos, correctly diagnosing the condition in 60–64 percent of them. Fat et al.9 determined that the retrieval of the videos was dependent on the search term used. Pant et al.26 examined YouTube content for acute myocardial infarction (AMI). They found that anecdotal videos from patients and videos from professional organizations primarily focused on the symptoms, signs, and treatment of a heart attack, while videos from non-teaching hospitals and graphic representations concentrated on the pathophysiology of the disease. The personal videos featured individual experiences of the symptoms and signs of the disease (58%), followed by methods for prevention and treatment (45%) and perspectives on the news reports related to newer diagnostic techniques (9%). Videos categorized as personal experiences recorded the maximum number of dislikes. Out of 104 videos examined by Pant and colleagues, only 7 videos discussed the need for immediate treatment when suspecting a myocardial infarction. Six of these came from professional organizations. In 2012, Clerici et al.28 analyzed videos on rhabdomyosarcoma. They found that 82.5 percent (n = 149) of the videos involved personal experience, and only 16.7 percent of all the videos included useful information. Only one, a video created by a physician, was completely accurate. Approximately 7 percent of the videos provided information about rhabdomyosarcoma itself, 7.3 percent discussed treatment for it, and the rest depicted reactions to the loss of a person due to the disease. This study concluded that there was a lack of quality videos on YouTube featuring information on the various aspects of the disease including its treatment. Singh et al.,10 studying videos related to rheumatoid arthritis, reported that 54.9 percent (n = 102) of the videos were found useful and 30.4 percent were misleading, including misinformation about the causal mechanism of the condition and the promotion of unscientific therapies. In addition, 19 percent of these misleading videos portrayed the standard treatment methods as lethal and pathogenic. About one-third (36.3%) of the videos were from independent users, followed by forprofit organizations (22.5%), government entities/schools/professional organizations (21.5%), and health information websites (19.6%). Notably, 73.9 percent of the videos from medical advertisements and for-profit organizations were misleading. This study also found that there were no differences in number of views between the useful and misleading videos, suggesting a high probability for a lay user to encounter misleading information. Finally, the study focusing on music therapy videos on YouTube conducted by Gooding and Gregory21 found that although the therapy videos had adequate visual and audio fidelity, they lacked effective narrative description and identification information. One of the top five music
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therapy videos exhibited poor quality according to the standards set by American Music Therapy Association (AMTA).
Discussion In an effort to make informed healthcare decisions, patients are increasingly turning to the Internet to better understand their medical conditions and treatments. As seen in this review, YouTube hosts videos providing information on the pathogenesis, diagnosis, treatment, and prevention of various health conditions. The majority of the videos reviewed in the articles cited were narrative experiences posted by individual users. This review of 18 articles provides six insights on the characteristics of health-related information available on YouTube: (1) YouTube hosts health care–related communication and health consumers are viewing this information; (2) public service announcements from organizations, documentaries, and TV shows, and user-generated anecdotal content in which users discuss their perspectives and their experiences were the most commonly found sources; (3) misleading information is found on YouTube, and the probability of healthcare consumers encountering such material during the information-seeking process is high; (4) reliable postings from government/professional organizations are available; (5) overall, there was little difference between the frequency of viewings between misleading and accurate posts; and (6) there has been little research on developing interventions to increase the ease with which users can find useful healthcare information on YouTube. Three major safety concerns were identified when consumers use information obtained from YouTube for health care decision-making: (1) YouTube is used as a medium for promoting unscientific therapies that are yet to be approved by the appropriate agency,10 (2) YouTube contains information contradicting reference standards/guidelines, and (3) YouTube has the potential to change the beliefs of patients about controversial topics such as vaccinations. Studies have suggested that pharmaceutical companies and for-profit institutions have a presence on YouTube and are increasingly using it to advertise their products.10,26 YouTube also contains information on the use of drugs23 that are yet to be approved by the Food and Drug Administration and that may be dangerous when used without medical supervision. Companies are using YouTube portal to reach health consumers and circumvent government regulations.30–32 YouTube users can create and upload videos to express their opinions on healthcare topics. Many of these videos contain information that negatively portrays public health interventions. The results of content analyses suggested that the majority of video clips addressing vaccination portrayed it negatively, with the negative portrayal videos receiving a higher number of views than the positive ones.14 The results of early studies conducted by Ache and Wallace15 in 2008 found that 32 percent of the videos on HPV vaccination were negative portrayals. A more recent study conducted by Briones et al.12 found 51.7 percent of the videos on HPV vaccine portrayed it negatively. This suggests an increased proliferation of content having a negative tone over the past few years. In addition, with all three studies12,14,15 suggesting that the negative videos had a higher average number of likes than their positive counterparts, the probability of a lay user perceiving such videos as the ones they should watch may significantly reduce the effectiveness of health campaigns.33 The educational value of showing videos providing instruction on healthcare procedures has been demonstrated for both professionals and laypersons.45 People rely on YouTube to find such demonstration videos and learn specific procedures such as CPR,19 pelvic floor muscle exercises,27 and music therapy.21 Video-based self-instruction, that is, learning from a video depicting a procedure, has been found to be an effective way to understand a method.34,35,42 Hence, it is important that video content depicting such procedures is accurate.44
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The typical information available from governing bodies included information on symptoms, treatment and preventive methods, and risk factors. Some organizations interviewed patients who narrated their experiences with a disease/condition. Singh et al.10 recommend that government, professional organizations, and healthcare professionals actively participate on YouTube by developing and uploading such videos to YouTube, as studies have identified that the information provided by such sources is trustworthy. YouTube can become a powerful information dissemination platform if healthcare professionals and organizations contribute to it. Only minimal barriers can realistically be applied to video uploads due to the nature of such video hosting portals as YouTube. However, there is a need to develop better algorithms and design interfaces to provide results’ information that is accurate. In addition, integrating verified information available from federal agencies such as MedlinePlus, the medical information glossary maintained by the National Library of Medicine, and public report cards generated by federal entities such as Medicare (e.g. Medicare Hospital Compare) might increase the trustworthiness and veracity of the information available. Incorporating features such as crowdsourcing, whereby current YouTube users are encouraged to report inaccurate and misleading information, could be another strategy for preventing the spread of misinformation. Interfaces that integrate YouTube videos with the references from clinical research studies for the claims made could also enhance the dissemination of accurate information. Anecdotal information from patients is becoming increasingly available to the public in the form of YouTube videos and as discussion posts on peer-support groups.36 Studies have indicated that when making treatment choices, such anecdotal information is heavily weighed by the health consumers.37 Hence, there is also a need to integrate consumers’ narrative accounts into the decision-making process by presenting anecdotal information in ways that complement the quantitative quality information provided by federal entities. Seeking, filtering, and integrating useful, trustworthy, and valid sources of health information, a complex cognitive activity in itself is becoming increasingly difficult, compounded by the increasing amount of medical information available. Healthcare consumers need to develop skills for accessing, comprehending, and effectively using the information available on the Internet. In addition, as consumers use this information as a source for making decisions, issues such as trust and credibility become important considerations. As this review suggests, there is a need to understand how consumers make health care–related decisions and to identify effective ways for disseminating trustworthy information on the Internet so that it becomes an effective part of their healthcare decision-making process.
Conclusion The Internet provides many opportunities for consumers to gain information on health care. These resources can provide novel ways for consumers to gain information and share their experiences of investigation, diagnosis, and treatment of disease.38–41 Studies on the use and implications of YouTube for healthcare communication are still in the nascent stage. As seen from this review, YouTube holds a vast amount of data pertaining to health care. Some of this information is misleading or incorrect. With the results of recent surveys suggesting that YouTube is ranked as the third most accessed website worldwide, the probability of disseminating such misleading information to healthcare consumers is high and can have catastrophic implications. There is a significant lack of research on developing interventions for the effective dissemination of YouTube videos for healthcare communication. YouTube could be used as a very effective information resource if guided search practices are followed. Interventions need to be developed to assure that consumers are able to critically
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assimilate the information posted on YouTube with more authoritative information sources to make effective healthcare decisions. To address this issue, we call for further cross-disciplinary research focusing on human factors engineering and user-centered design to develop interventions that support effective filtering and integration of useful, trustworthy, and valid sources of health information on social media, including YouTube. Acknowledgements All the authors have contributed to the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content; and (3) have made final approval of the version to be submitted. All persons who qualify as authors have been listed in this article.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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17. Pandey A, Patni N, Singh M, et al. YouTube as a source of information on the H1N1 influenza pandemic. Am J Prev Med 2010; 38(3): e1–e3. 18. Steinberg PL, Wason S, Stern JM, et al. YouTube as source of prostate cancer information. Urology 2010; 75(3): 619–622. 19. Murugiah K, Vallakati A, Rajput K, et al. YouTube as a source of information on cardiopulmonary resuscitation. Resuscitation 2011; 82(3): 332–334. 20. Knosel M and Jung K. Informational value and bias of videos related to orthodontics screened on a video-sharing web site. Angle Orthod 2011; 81(3): 532–539. 21. Gooding LF and Gregory D. Descriptive analysis of YouTube music therapy videos. J Music Ther 2011; 48(3): 357–369. 22. Stamelou M, Edwards MJ, Espay AJ, et al. Movement disorders on YouTube—caveat spectator. N Engl J Med 2011; 365(12): 1160–1161. 23. Sajadi KP and Goldman HB. Social networks lack useful content for incontinence. Urology 2011; 78(4): 764–767. 24. Knosel M, Jung K and Bleckmann A. YouTube, dentistry, and dental education. J Dent Educ 2011; 75(12): 1558–1568. 25. Yoo JH and Kim J. Obesity in the new media: a content analysis of obesity videos on YouTube. Health Commun 2012; 27(1): 86–97. 26. Pant S, Deshmukh A, Murugiah K, et al. Assessing the credibility of the “YouTube approach” to health information on acute myocardial infarction. Clin Cardiol 2012; 35(5): 281–285. 27. Stephen K and Cumming GP. Searching for pelvic floor muscle exercises on YouTube: what individuals may find and where this might fit with health service programmes to promote continence. Menopause Int 2012; 18(3): 110–115. 28. Clerici CA, Veneroni L, Bisogno G, et al. Videos on rhabdomyosarcoma on YouTube: an example of the availability of information on pediatric tumors on the web. J Pediatr Hematol Oncol 2012; 34(8): e329–e331. 29. Shepherd S. Marketing. The dawn of the fan. Health Serv J 2008; 21: 20–22. 30. Elkin L, Thomson G and Wilson N. Connecting world youth with tobacco brands: YouTube and the internet policy vacuum on web 2.0. Tob Control 2010; 19(5): 361–366. 31. Freeman B and Chapman S. Is “YouTube” telling or selling you something? Tobacco content on the YouTube video-sharing website. Tob Control 2007; 16(3): 207–210. 32. Kim K, Paek HJ and Lynn J. A content analysis of smoking fetish videos on YouTube: regulatory implications for tobacco control. Health Commun 2010; 25(2): 97–106. 33. Lau AY, Gabarron E, Fernandez-Luque L, et al. Social media in health—what are the safety concerns for health consumers? HIM J 2012; 41(2): 30–35. 34. Lynch B, Einspruch EL, Nichol G, et al. Effectiveness of a 30-min CPR self-instruction program for lay responders: a controlled randomized study. Resuscitation 2005; 67(1): 31–44. 35. Jones I, Handley AJ, Whitfield R, et al. A preliminary feasibility study of a short DVD-based distancelearning package for basic life support. Resuscitation 2007; 75(2): 350–356. 36. Chalil Madathil K, Greenstein JS, Neyens DM, et al. An investigation of the informational needs of ovarian cancer patients and their supporters. In: Proceedings of the human factors and ergonomics society’s international annual meeting, San Diego, CA, 30 September–4 October 2013. 37. Fagerlin A, Wang C and Ubel PA. Reducing the influence of anecdotal reasoning on people’s health care decisions: is a picture worth a thousand statistics? Med Decis Making 2005; 25(4): 398–405. 38. Chalil Madathil K, Koikkara R, Obeid J, et al. An investigation of the efficacy of electronic consenting interfaces of research permissions management system in a hospital setting. Int J Med Inform 2013; 82(9): 854–863. 39. Sanderson IC, Obeid JS, Chalil Madathil K, et al. Managing clinical research permissions electronically: a novel approach to enhancing recruitment and managing consents. Clin Trials 2013; 10(4): 604–611. 40. Obeid J, Gerken K, Chalil Madathil K, et al. Development of an electronic research permissions management system to enhance informed consents and capture research authorizations data. In: Proceedings of the AMIA clinical research informatics summit, San Francisco, CA, 18–22 March 2013.
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JHI0010.1177/1460458213512220Health Informatics JournalMadathil et al.
Article
Healthcare information on YouTube: A systematic review
Health Informatics Journal 0(0) 1–22 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1460458213512220 jhi.sagepub.com
Kapil Chalil Madathil, A Joy Rivera-Rodriguez, Joel S Greenstein and Anand K Gramopadhye Clemson University, USA
Abstract This article reviews the peer-reviewed literature addressing the healthcare information available on YouTube. Inclusion and exclusion criteria were determined, and the online databases PubMed and Web of Knowledge were searched using the search phrases: (1) YouTube* AND Health* and (2) YouTube* AND Healthcare*. In all, 18 articles were reviewed, with the results suggesting that (1) YouTube is increasingly being used as a platform for disseminating health information; (2) content and frame analysis were the primary techniques employed by researchers to analyze the characteristics of this information; (3) YouTube contains misleading information, primarily anecdotal, that contradicts the reference standards and the probability of a lay user finding such content is relatively high; (4) the retrieval of relevant videos is dependent on the search term used; and (5) videos from government organizations and professional associations contained trustworthy and high-quality information. YouTube is used as a medium for promoting unscientific therapies and drugs that are yet to be approved by the appropriate agencies and has the potential to change the beliefs of patients concerning controversial topics such as vaccinations. This review recognizes the need to design interventions to enable consumers to critically assimilate the information posted on YouTube with more authoritative information sources to make effective healthcare decisions.
Keywords consumer health information, e-health, health information on the Web, healthcare information on YouTube, video-sharing sites
Introduction Video-sharing sites are popular sources of information. YouTube, the most well known of these sites, exceeds 2 billion views per day,1 with a new video being uploaded on average every minute and an average user spending at least 15 min a day on the site.2 A recent Health Information Corresponding author: A Joy Rivera-Rodriguez, Department of Industrial Engineering, Clemson University, 130-C Freeman Hall, Clemson, SC 29634, USA. Email: [email protected]
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National Trends Survey (HINTS) reports a substantial increase in the use of the Internet for retrieving health information. Recent surveys have found that 8 of 10 Internet users accessed health information online.3,4 Patients with chronic illnesses in particular are increasingly relying on Internet-based resources to manage their conditions.5 According to surveys conducted by the Pew Research Center, decisions made by 75 percent of such patients on how to treat their condition were influenced by the knowledge acquired through online health information searches.5–8 These results suggest that a platform like YouTube has the potential to serve as an important vehicle for sharing and disseminating timely health-related information, both in its function as a repository of videos and as a social networking interface where users can interact and socialize. In fact, this interaction may increase its influence on healthcare decisions, extending its benefits beyond being a diagnostic aid or an educational tool for healthcare conditions and their management to being a source for information sharing among patients coping with illness.9,43 However, healthcare providers and government agencies alike have expressed concern about the veracity and quality of the information available on this platform,10–13 primarily for two reasons: increased use of YouTube to post anecdotal information and more importantly, its minimal guidelines and interventions regulating the content of the material uploaded on the site. These issues raise questions about the trustworthiness of this information source and the risk of disseminating misleading information. As a result, government agencies and researchers are currently examining the use of social media as a platform for communicating health information. This article reviews the peer-reviewed literature investigating the content and veracity of healthcare information available on YouTube. It discusses the implications of these studies and provides suggestions for future research to support the dissemination of reliable information to healthcare consumers.
Method Inclusion and exclusion criteria The inclusion criteria for the studies included in this review were as follows: (1) the domain of the article was related to health care; (2) the primary focus of the article was to understand the type of healthcare information available on YouTube; (3) the article was published in a peer-reviewed journal; (4) the article detailed the methodology of the study reported; and (5) the article was available in English. Articles were excluded if they contained only conceptual or theoretical discussions on the potential use of YouTube and similar social media for healthcare information dissemination.
Search strategy The online databases Web of Knowledge, an academic citation and indexing service, and PubMed, the MEDLINE database of references and abstracts on life sciences and biomedical topics, were searched using the following search phrases: (1) YouTube* AND Health* and (2) YouTube* AND Healthcare*. In this review, the term health care was used to include studies that focus on procedures and methods that could be used by a healthcare consumer to maintain and improve their physical and mental health. The initial search was conducted on the second week of October 2012, and a subsequent search was conducted on the third week of November 2012. These searches yielded 94 articles from the Web of Knowledge database and 77 articles from PubMed. The initial screening was done by the first author (K.C.M.). The second author (A.J.R-R.)
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Figure 1. Selection process for study inclusion.
separately reviewed the screened articles to ensure that the articles met the inclusion criteria. The discrepancies were discussed by the two researchers until a consensus was met. In all, 31 articles met the inclusion criteria, and a search of their references yielded 2 additional articles appropriate for this review. Among the 33 articles subsequently screened for content, 10 did not meet the inclusion criteria. Of the 23 articles remaining, 2 analyzed the linguistic features and social support mechanisms of the videos and user comments, and another focused on identifying the personal health information present on YouTube. These articles were excluded due to their narrow scope. Two studies investigating smoking and smoking cessation on YouTube which focused on understanding the influence of camouflaged advertisements supporting the use of tobacco were also excluded. Thus, in total, 18 articles were included in this review. The selection process for study inclusion is shown in Figure 1.
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Results Of the 18 articles reviewed, 11 were from the United States, 5 from Europe, 1 from Canada, and 1 from India. A total of 11 studies focused on the informational content available for various health conditions, 5 focused on the portrayal of controversial medical issues such as vaccination and organ donation, 1 focused on the quality of information, and 1 focused on the portrayal of dentistry. Table 1 summarizes the key findings of the 18 articles reviewed.
Methodological characteristics and analytical techniques YouTube offers four ways of sorting search results: (1) relevance, (2) upload date, (3) view count, and (4) rating. Of the 18 studies reviewed here, 14 (77.8%) sorted their results based on relevance, 1 (5%) on view count, and 2 (11.1%) employed both relevance and view count; the remaining study27 employed a snowball technique, viewing a video, followed by viewing those suggested by YouTube as being relevant to emulate a typical strategy followed by a typical user. All studies subsequently applied content analysis by reviewing the videos and coding them according to view count, clip length, the source of the video, comments, and viewer ratings. Table 2 shows these elements extracted from YouTube by the individual studies. As Table 2 indicates, view count and clip length were most frequently extracted for analysis, with 87 percent of the studies using view count and 57 percent using clip length to compare the videos. Two of the 18 studies supplemented this content analysis with framing analysis,16,25 a method that analyzes the frames in the media from an affective and a cognitive perspective. One of these studies focused on the portrayal of organ donation on YouTube16 and the second on obesity.25 For example, in the study examining obesity, framing analysis was used to examine the videos for causal claims and solutions pertaining to obesity. This involved analyzing the frames of the video for behavioral, biological, and systematic causal claims and treatment options. In 89 percent of the 18 studies reviewed, two or more reviewers analyzed the content and subsequently computed the level of inter-rater agreement (IRA). The IRA ranged from 0.6 to 1.00. The specific analytical techniques used in the studies are seen in Table 3 below. Seven (38.8%) studies evaluated the video content by categorizing its tone as positive, negative, or neutral/ambiguous based on the portrayal of the issue/condition.9,12,14,15,18,24,29 Generally, videos were categorized as positive if their approach encouraged consumers to seek an intervention, and negative if they discouraged viewers from doing so. The study on organ donation by Tian16 applied this analysis to the text comments, categorizing the videos studied based on the poster’s behavioral intention. Nine (50%) studies analyzed the content based on the source.10,12,15–18,25,26,28 The primary source types used were organizations, including governmental agencies, non-profit, and for-profit organizations; independent users; and news agencies. Two (11.1%) studies15,25 analyzed the content focusing on videos from the media; the categories included podcasts, TV news coverage, TV documentaries, TV commercials, and university lectures. Five (27.7%) studies20,21,24,26,28 categorized the content based on the intended audience of the video, with patients, care givers, and healthcare professionals being the primary types. In all, 16 (88.89%) studies9,10,12,14,17–28 assessed the credibility and veracity of the information in the video by assessing its quality in relation to that needed for informed healthcare decisionmaking. These studies focused on understanding how this information compared to reference standards. Finally, 5 (27.78%) studies14,16,21,23,25,27 used inductive coding, meaning they categorized the information based on the general themes identified while conducting the analysis.
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Searched using the keywords vaccination and immunization.
To understand how immunization information is portrayed on YouTube.
To understand how HPV is portrayed on YouTube.
Keelan et al.14
Ache and Wallace15
Searched using the keywords Gardasil, cervical cancer vaccination, and HPV vaccination.
Search criteria used by the authors
Objective
Author
Table 1. Main results of reviewed studies.
146
153
Number of videos analyzed
Videos were categorized as TV news coverage, TV commercials, TV documentary, university lecture/educational, or YouTube member/ subscriber-created content. Comments categorized as positive, negative, or neutral regarding HPV vaccination. Analysis conducted to understand the relationship between the number of views and user-posted comments.
Categorized the videos as negative, positive, or ambiguous based on the portrayal of the immunization information. The scientific claims made by the videos were classified as substantiates or contradicts standard immunization guide.
Design method
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(Continued)
• 75% of the video clips portrayed HPV vaccination positively and 25.3% portrayed it negatively. • 32% of the video clips generated at least one posted comment. • 61% of the user-generated content portrayed HPV negatively. • Video clips portraying HPV vaccination negatively were significantly longer than those carrying a positive message.
• 48% of the videos portrayed a positive message, 32% negative, and 20% ambiguous. • Negative videos had a higher number of views and higher mean ratings. • 50% of the videos posted did not support immunization. • Information in negative videos often contradicted the reference standard.
Key findings
Chalil Madathil et al. 5
Search criteria used by the authors
Searched using the keyword organ donation.
Searched using the keywords swine flu, H1N1 influenza, and influenza in June 2009 and looked for videos posted over the past 3 months.
Objective
To examine YouTube content on organ donation and audience response.
To understand the use of YouTube as an information dissemination mechanism by organizations, independent users, and news agencies during the initial phase of the H1N1 outbreak.
Author
Tian16
Pandey et al.17
Table 1. (Continued)
142
355
Number of videos analyzed
Two researchers categorized the videos as useful, misleading, or news updates based on their characteristics. Videos were also categorized based on the source: CDC, the UN and WHO, the Red Cross, news agencies, and independent users.
The content of videos was classified as positive, negative, or neutral based on the tone of the post. The comments were coded as positive, negative, or neutral and further analyzed to understand if the viewer intended to sign a donor card after viewing the video or if the viewer had signed one.
Design method
• 61% of videos had useful information about H1N1. • 23% of the videos were misleading. • Total viewership share of useful videos was 71% and that of misleading videos 18%. • 12% of the useful videos were from the CDC, with a viewership share of 47%. • No differences in viewership/day for useful and misleading videos. • The misleading videos portrayed messages against vaccination and H1N1 as a manmade conspiracy.
• 96% of the organ donation videos had a positive valence. • 35% were produced by individuals, 34% by non-profit organizations, and 7% were television programs featuring interviews with representatives from non-profit organizations. • Kidney and liver donations were the organs most frequently discussed. • The organ donation process was the most discussed item. • 90% of the comments had a positive valence.
Key findings
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Objective
To understand the quality of prostate cancer–related information on YouTube and to investigate the presence of bias against screening and treatment.
To understand the content and quality of CPR information available on YouTube.
Author
Steinberg et al.18
Murugiah et al.19
Table 1. (Continued)
Searched using keywords CPR, Cardiopulmonary resuscitation, BLS and Basic life support.
Three sets of searches. First set included the search terms prostate-specific antigen, prostate cancer and PSA and prostate cancer and diagnosis. The second set used the search terms prostate cancer and radiotherapy, and prostate and radiotherapy. The third set involved prostatectomy, prostate cancer and surgery, and robot and prostate cancer.
Search criteria used by the authors
52
51 videos in total analyzed, including 14 PSA videos, 5 radiotherapy videos, and 32 surgery videos.
Number of videos analyzed
Two researchers categorized the source of videos as a private agency, guideline bodies such as the Red Cross, emergency medical technicians,
Two urology residents analyzed the videos for informational and scientific content, rating them as excellent, fair, and poor. In addition classified, the bias as for, against, or neutral/ unclear.
Design method
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(Continued)
• 69% of the videos illustrated the correct compression–ventilation ratio. • 64% gave information on the location of chest compressions. • 35% provided information on the rate of chest compressions.
• 73% of the videos had fair to poor information content. • More than two-thirds of the videos were in favor of PSA testing or treatment of prostate cancer. • Surgical videos depicted the technical aspects of a prostatectomy. • Advertisements supported robotic prostatectomy with minimal information about the technology. • Videos on PSA testing were heavily biased, with no videos arguing against PSA screening for prostate cancer. • YouTube may not be a reliable source of information for consumers seeking information to better understand the screening for and management of prostate cancer.
Key findings
Chalil Madathil et al. 7
To understand the content and bias of orthodontic videos on YouTube. In addition, to evaluate the changes in the attitude of a nondentist adult and an adolescent toward orthodontics.
To understand the quality and veracity of videos on infantile spasms (childhood epileptic encephalopathy) to investigate if YouTube could
Fat et al.9
Objective
Knosel and Jung20
Author
Table 1. (Continued)
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Searched using the keywords infantile spasm, spasm, epileptic spasm, and West syndrome.
Searched using the keyword orthodontist OR orthodontic OR orthodontics OR braces.
Search criteria used by the authors
28
60
Number of videos analyzed
Two researchers analyzed the videos and rated their technical quality, diagnosis of infantile spasms, and the
• 60%–64% of the videos showcased infantile spasms. • 71% of the videos portrayed good clinical examples of infantile spasms. • The search term played a key role in finding a good quality video.
• The quality of information provided in the videos was low; the majority were proorthodontics. • A majority of the videos were user-generated content. • The probability of a video being an advertisement was high when sorted by relevance.
• 40% gave information on the depth of chest compressions. • Videos omitted several important steps. Several vital steps were depicted incorrectly. • The best videos were not the most viewed ones.
CPR instructors and physicians, individuals with unspecified credentials and news programs. The content of the videos was ranked on a scale from 0 to 8, based on the accuracy of demonstration. Videos were analyzed by an orthodontist, a non-dentist adult, and an adolescent with no history of orthodontic treatment. The videos scored from 1 to 10 based on the information available on orthodontics classified based on the intention of the video, its source, and the presence of bias (whether orthodontics was portrayed positively or negatively).
Key findings
Design method
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Searched using the keywords music therapy and music therapy session
Searched using keywords Dystonia, Parkinson’s, chorea, myoclonus, tics, and tremor.
To understand the content on movement disorders on YouTube.
Stamelou et al.22
Search criteria used by the authors
To understand the informational content of music therapy-related videos on YouTube.
be used as an educational platform for both parents and medical staff.
Objective
Gooding and Gregory21
Author
Table 1. (Continued)
29
32
Number of videos analyzed
Videos of patients purported to have a movement disorder were analyzed to understand if the disorder was psychogenic (disorders not related to a medical disorder, usually associated with psychological factors) or organic (disorder caused by a detectable physiological change in an organ).
The videos were analyzed using a rubric designed to evaluate therapy specific information. In addition, the top five videos found when sorted by number of views were further analyzed for their conformance to the professional level of practice competencies suggested by the AMTA.
potential of the video to be used as a teaching resource.
Design method
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(Continued)
• 66% were psychogenic and 34% were organic. • 53% recommended treatment for a psychogenic movement disorder and 20% recommended treatment for an organic movement disorder. • Treatment recommendations ranged from the use of immunosuppressive agents to the use of craniosacral massage and herbal treatments. • The key finding was that the information was misleading, providing inaccurate depictions of the disease and its treatment.
• 37% of the videos had sessions with older adults; 33% were videos for special populations, and 15% were medical music therapy sessions while 60% of the videos were documentaries produced by educational institutions, organizations, and clinics. • 20% of the top videos fell short of the requirements mandated by the AMTA. • None of the video clips had information on accreditation.
• Educating patients on search strategies and selection practices is vital to ensure the veracity and quality of information.
Key findings
Chalil Madathil et al. 9
Search criteria used by the authors
Searched all sites using the keyword incontinence. The initial 30 results analyzed further.
Searched using keyword dentist OR dentists OR dentist’s OR dental OR dentistry.
Searched using the keywords Obesity and Obese
Objective
To understand the availability, quality, and variety of urinary incontinence– related content on YouTube, Facebook, and Twitter.
To understand the informational value, source, and bias of dentistry-related videos on YouTube.
To understand the portrayal of obesity in obesity-related videos.
Author
Sajadi and Goldman23
Knosel and Jung24
Yoo and Kim25
Table 1. (Continued)
417 videos analyzed. Every fifth video from the search results was selected for analysis.
120 videos analyzed, including the first set of 30 videos when sorted by relevance and the most viewed under the system-generated filter categories All and Education.
30
Number of videos analyzed
Videos were analyzed by two researchers and classified as TV news coverage, public service announcement, excerpt from TV documentary, excerpt from entertainment, user-generated content, podcast, and others. In addition, each media frame was analyzed and classified based
Two researchers analyzed the videos using a questionnaire and ranked them on a scale from 1 to 10 based on how they portrayed dentistry. The intention, credibility, and the presence of bias also evaluated.
Videos were analyzed for informative content on incontinence and categorized based on the source—healthcare providers, organizations, patients, and commercial videos.
Design method
• 37% were user-generated content, 21% were television news, and 15% were public service announcements. • 59% made causal claims about obesity, with 74% mentioning behavioral causes followed by systemic and biological causes. • Consuming unhealthy food and a sedentary lifestyle were portrayed as the major causes of obesity.
• The title of the video and the number of views did not have any relationship with the informational value of the video. • The primary aim was entertainment, followed by advertisement and education. • The videos under the category “Education” were found to be more than the videos available using the category “All.”
• 45% of the videos were informative. • 64% were from healthcare providers or organizations. • Of the 12 commercial videos, 92% were advertisements and 8% were for surgical procedures for incontinence.
Key findings
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To understand the portrayal of HPV vaccines with emphasis on their source and tone. To investigate the relationship between the source and the tone of the video.
To understand the accuracy of information available on AMI.
Pant et al.26
Objective
Briones et al.12
Author
Table 1. (Continued)
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Searched using the terms acute myocardial infarction, heart attack, acute coronary syndrome, and STelevation myocardial infarction.
Searched using the terms HPV vaccine, HPV vaccination, HPV immunization, human papilloma virus vaccine, human papilloma virus immunization, Gardasil, and Cervarix. The search results sorted based on relevance.
Search criteria used by the authors
104
172
Number of videos analyzed
Videos were classified as personal experience, news reports, professional groups, pharmaceutical companies, lectures from medical institutions, and other media.
(Continued)
• Videos from professional societies and lectures were longer. • Only 6% featured the different aspects of myocardial infarction; these videos were among the least viewed.
• 36% were from news sources, 13% were consumer-generated, 9% were from medical centers, 9% were from advocacy groups, 8% were from non-profit organizations, 4% were from pharmaceutical companies, 2% were from governmental agencies, and 1% from a professional association. • 52% had a negative tone and 33% a positive tone. • Videos that disapproved of the HPV vaccine were more liked than those that approved its use. • No significant relationship was found between the source and tone.
• Behavioral changes were suggested as the most common treatment.
on its portrayal of the causal factors of obesity (behavioral, biological, and systemic). The treatment options provided in the video were also analyzed. The researchers employed content analysis and coded the characteristics of the video, with a particular emphasis on the tone of the message and on the content.
Key findings
Design method
Chalil Madathil et al. 11
Singh et al.10
Author
To understand the quality and veracity of information on rheumatoid arthritis.
Objective
Table 1. (Continued)
Searched using the term Rheumatoid Arthritis.
Search criteria used by the authors
102
Number of videos analyzed
• 30% of the videos were misleading. • The average reliability score for the useful videos was 3.2. • 73.4% were advertisements. • Videos from university channels and professional organizations disseminated useful information. • No significant differences in the viewership/day between useful and misleading information.
• Only 17% of the videos emphasized preventive aspects, the majority being advertisements from companies. • 23% provided information for patients and 31% for healthcare providers. • Information available on YouTube on myocardial infarction is misleading and often not regulated.
All videos were analyzed for the following items: The depiction of the pathophysiology of the disease, including its signs and symptoms The measures to be taken in case of positive AMI laboratory tests and preventive measures with an emphasis on lifestyle management The treatments and the complications associated with the disease. Two researchers analyzed the information and classified it as useful or misleading, rating the quality on a 1–5 scale, with 5 being excellent. Videos categorized as useful were further analyzed for the veracity and reliability of the content.
Key findings
Design method
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To understand the type of information available on YouTube on pelvic floor muscle exercise.
To understand the information available on YouTube pertaining to rhabdomyosarcoma and soft-tissue sarcomas, common in children.
Stephen and Cumming27
Clerici et al.28
Searched using the terms pediatric soft-tissue sarcoma, rhabdomyosarcoma, and soft-tissue sarcoma in children.
Searched using the term pelvic floor exercise.
Search criteria used by the authors
149
22
Number of videos analyzed
The videos were classified based on the source and the type of the content. They were categorized as useful, misleading, personal experience, and not pertinent.
The researchers searched and analyzed the results using the snowball technique to simulate real-world use. Each video underwent content analysis, with the characteristics of each being recorded in three stages over a 7-month period.
Design method
• Only 1 video had complete and adequate information. • 1 video had misleading information. • Only 16% of the videos depicted useful content. • 83% of the videos were personal experiences. • Videos depicting a patient story recorded a higher number of views than those talking about the medical and treatment aspects of the disease.
• The age of the audience ranged from 35 to 64 years. • Music was used as background in 36% of the clips.
Key findings
HPV: human papillomavirus; CPR: cardiopulmonary resuscitation; AMI: acute myocardial infarction; CDC: Centers for Disease Control and Prevention; UN: United Nations; WHO; World Health Organization; AMTA: American Music Therapy Association; PSA: prostate-specific antigen.
Objective
Author
Table 1. (Continued)
Chalil Madathil et al. 13
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Clerici et al.28
Stephen and Cumming27
Singh et
•
•
•
•
•
•
al.10
•
•
•
Briones et al.12
•
•
•
•
Yoo and Kim25
Pant et al.26
•
•
•
Knosel et al.24
Sajadi and
• •
•
•
• •
•
•
•
•
•
•
•
•
•
•
Stamelou et al.22
Goldman23
•
Gooding and Gregory21
•
•
Fat et
•
•
•
al.9
Knosel and
•
•
•
•
Jung20
•
Murugiah et
•
•
•
•
•
•
•
al.19
•
•
•
•
Steinberg et
•
•
Pandey et al.17
•
•
•
Source Comments Viewer Country Upload Title Description Web page Number of Original Age/gender rating of origin date of video URL subscribers or repost of audience
al.18
•
•
•
Ache and Wallace15
•
•
•
Keelan et al.14
Tian16
View count
Clip length
Study
Table 2. Methodological elements.
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• •
•
•
•
•
•
•
•
•
•
•
•
•
•
Steinberg et al.18
Murugiah et al.19
Knosel and Jung20
Fat et al.9
Gooding and Gregory21
Stamelou et al.22
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•
•
•
•
•
•
al.26
Singh et al.10
Clerici et al.28
Stephen and Cumming27
Pant et
Briones et
•
•
•
al.12
Yoo and
•
•
•
•
Kim25
Knosel et
al.24
Sajadi and Goldman23 • •
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Pandey et
•
•
•
•
al.17
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Tian16
Ache and
•
•
Based on information quality
•
Based on media presentation
•
Based on intention/ intended audience
•
Wallace15
Keelan et al.14
Based on source
Based on tone of the videos/ comments (bias)
Content analysis
Framing analysis
Content categorization
Analysis techniques
Calculated level of inter-rater agreement
Study
Table 3. Analytical techniques and resulting categories.
•
•
•
•
•
•
Based on themes generated during content analysis
Chalil Madathil et al. 15
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Characteristics of information available on YouTube The 18 articles reviewed fell into two primary categories: those focusing on specific healthcare issues/conditions and those investigating health care–related videos related to diagnosis, treatment, and disease management procedures. Studies focusing a health issue. The five studies focusing on specific healthcare concerns analyzed videos on vaccinations (n = 3), organ donation (n = 1), and obesity (n = 1). Keelan et al.14 found that 32 percent of the videos they analyzed were not supportive of immunization and that these videos received a higher mean star rating and more views than the supportive ones.14 More importantly, these videos contained information that contradicted the reference standards. Ache and Wallace15 found that 25.3 percent of the videos they analyzed were not supportive of the vaccination for human papillomavirus (HPV).15 The number of views for videos supporting and those not supporting this vaccine were similar, suggesting that the chance of an information seeker finding contradictory information is high, a problem compounded by the view comments, which contained biased and inaccurate information. Briones et al.’s12 study focusing on the sources of HPV videos suggested that the majority originated from news sources, followed by user- and organizationgenerated content. However, the results of this study, conducted 3 years after that of Ache and Wallace,15 found that 51.7 percent of the videos expressed negative attitude toward the HPV vaccine. This study did not find any significant differences between the source and the number of views and the like/dislike rating. Videos with a negative tone and those that disapproved of the vaccine were more liked than the ones that approved the vaccine. In contrast, Tian16 found that the healthcare issue of organ donation was in general positively portrayed: 95.8 percent of the videos he analyzed portrayed it positively and 2.5 percent portrayed it negatively. In all, 92 percent of the comments analyzed were positive and 5.7 percent were negative. The negative video portrayals and viewer comments focused on the corruption involved with this procedure, the high cost of the process, and the resulting unfair advantage for the wealthy. One potential explanation for the high incidence of positive videos was that a large number of them were posted by entities promoting organ donation. Specifically, 34.4 percent of the videos were generated by organizations, 6.5 percent by TV interviews, and 35.2 percent by individuals and students who support organ donation. Yoo and Kim25 investigated the portrayal of obesity, finding that 36.5 percent (n = 417) of the videos were user-generated, 20.6 percent TV news stories, and 14.9 percent public service announcements. More than half, 59 percent, analyzed the causes of obesity, with the primary ones being behavioral causes (74%) followed by systematic (36.6%) and biological/genetic (17.5%) causes. The solution options found exhibited a similar trend, advocating behavioral changes, followed by systematic solutions and medical treatment. Studies investigating videos related to diagnosis, treatment, and disease management procedures. In all, 9 of the articles reviewed focused on assessing the veracity of the information in the videos researched, which included a range of health problems and one exploring music therapy. For example, Steinberg et al.18 examined the portrayal of prostate cancer and found that the informational content was fair or poor in 73 percent (n = 51) of the videos with no significant differences related to video content or the number of views. Though they found support for prostate-specific antigen (PSA) testing, surgery, or radiotherapy in 69 percent of the videos, the informational content was of moderate quality. Murugiah et al.’s19 study, focusing on videos related to cardiopulmonary resuscitation (CPR), found that 88.5 percent (n = 52) of the videos were meant for lay rescuers and the remaining for
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healthcare professionals. In all, 48 percent of total videos analyzed came from people with unknown credentials. Though agencies such as the American Heart Association had YouTube channels, they provided few videos showcasing the CPR technique. One of the important findings of this study was that several videos skipped important steps in the CPR process and performed some steps incorrectly. In addition, similar to the study by Shepherd29, no significant differences were found in the number of views per day between the inaccurate and accurate CPR demonstration videos. Stamelou et al.’s22 studies on the information quality of YouTube content on movement disorders found a trend similar to the findings of Shepherd29 and Murugiah et al.19 suggesting that the information was misleading, providing inaccurate depictions of movement disorder conditions and their treatment. This situation was also observed in videos on incontinence, with Sajadi and Goldman23 finding under half (46%) of the videos contained useful information. Of this useful information, 64 percent came from healthcare professionals or organizations. This study also found a proliferation of advertisements from for-profit companies, with 92 percent of incontinence-related videos promoting incontinence briefs or pads. In contrast, the content analysis of the videos on infantile spasms conducted by Fat et al.9 suggested that 56 percent of the videos depicted high-quality videos, correctly diagnosing the condition in 60–64 percent of them. Fat et al.9 determined that the retrieval of the videos was dependent on the search term used. Pant et al.26 examined YouTube content for acute myocardial infarction (AMI). They found that anecdotal videos from patients and videos from professional organizations primarily focused on the symptoms, signs, and treatment of a heart attack, while videos from non-teaching hospitals and graphic representations concentrated on the pathophysiology of the disease. The personal videos featured individual experiences of the symptoms and signs of the disease (58%), followed by methods for prevention and treatment (45%) and perspectives on the news reports related to newer diagnostic techniques (9%). Videos categorized as personal experiences recorded the maximum number of dislikes. Out of 104 videos examined by Pant and colleagues, only 7 videos discussed the need for immediate treatment when suspecting a myocardial infarction. Six of these came from professional organizations. In 2012, Clerici et al.28 analyzed videos on rhabdomyosarcoma. They found that 82.5 percent (n = 149) of the videos involved personal experience, and only 16.7 percent of all the videos included useful information. Only one, a video created by a physician, was completely accurate. Approximately 7 percent of the videos provided information about rhabdomyosarcoma itself, 7.3 percent discussed treatment for it, and the rest depicted reactions to the loss of a person due to the disease. This study concluded that there was a lack of quality videos on YouTube featuring information on the various aspects of the disease including its treatment. Singh et al.,10 studying videos related to rheumatoid arthritis, reported that 54.9 percent (n = 102) of the videos were found useful and 30.4 percent were misleading, including misinformation about the causal mechanism of the condition and the promotion of unscientific therapies. In addition, 19 percent of these misleading videos portrayed the standard treatment methods as lethal and pathogenic. About one-third (36.3%) of the videos were from independent users, followed by forprofit organizations (22.5%), government entities/schools/professional organizations (21.5%), and health information websites (19.6%). Notably, 73.9 percent of the videos from medical advertisements and for-profit organizations were misleading. This study also found that there were no differences in number of views between the useful and misleading videos, suggesting a high probability for a lay user to encounter misleading information. Finally, the study focusing on music therapy videos on YouTube conducted by Gooding and Gregory21 found that although the therapy videos had adequate visual and audio fidelity, they lacked effective narrative description and identification information. One of the top five music
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therapy videos exhibited poor quality according to the standards set by American Music Therapy Association (AMTA).
Discussion In an effort to make informed healthcare decisions, patients are increasingly turning to the Internet to better understand their medical conditions and treatments. As seen in this review, YouTube hosts videos providing information on the pathogenesis, diagnosis, treatment, and prevention of various health conditions. The majority of the videos reviewed in the articles cited were narrative experiences posted by individual users. This review of 18 articles provides six insights on the characteristics of health-related information available on YouTube: (1) YouTube hosts health care–related communication and health consumers are viewing this information; (2) public service announcements from organizations, documentaries, and TV shows, and user-generated anecdotal content in which users discuss their perspectives and their experiences were the most commonly found sources; (3) misleading information is found on YouTube, and the probability of healthcare consumers encountering such material during the information-seeking process is high; (4) reliable postings from government/professional organizations are available; (5) overall, there was little difference between the frequency of viewings between misleading and accurate posts; and (6) there has been little research on developing interventions to increase the ease with which users can find useful healthcare information on YouTube. Three major safety concerns were identified when consumers use information obtained from YouTube for health care decision-making: (1) YouTube is used as a medium for promoting unscientific therapies that are yet to be approved by the appropriate agency,10 (2) YouTube contains information contradicting reference standards/guidelines, and (3) YouTube has the potential to change the beliefs of patients about controversial topics such as vaccinations. Studies have suggested that pharmaceutical companies and for-profit institutions have a presence on YouTube and are increasingly using it to advertise their products.10,26 YouTube also contains information on the use of drugs23 that are yet to be approved by the Food and Drug Administration and that may be dangerous when used without medical supervision. Companies are using YouTube portal to reach health consumers and circumvent government regulations.30–32 YouTube users can create and upload videos to express their opinions on healthcare topics. Many of these videos contain information that negatively portrays public health interventions. The results of content analyses suggested that the majority of video clips addressing vaccination portrayed it negatively, with the negative portrayal videos receiving a higher number of views than the positive ones.14 The results of early studies conducted by Ache and Wallace15 in 2008 found that 32 percent of the videos on HPV vaccination were negative portrayals. A more recent study conducted by Briones et al.12 found 51.7 percent of the videos on HPV vaccine portrayed it negatively. This suggests an increased proliferation of content having a negative tone over the past few years. In addition, with all three studies12,14,15 suggesting that the negative videos had a higher average number of likes than their positive counterparts, the probability of a lay user perceiving such videos as the ones they should watch may significantly reduce the effectiveness of health campaigns.33 The educational value of showing videos providing instruction on healthcare procedures has been demonstrated for both professionals and laypersons.45 People rely on YouTube to find such demonstration videos and learn specific procedures such as CPR,19 pelvic floor muscle exercises,27 and music therapy.21 Video-based self-instruction, that is, learning from a video depicting a procedure, has been found to be an effective way to understand a method.34,35,42 Hence, it is important that video content depicting such procedures is accurate.44
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The typical information available from governing bodies included information on symptoms, treatment and preventive methods, and risk factors. Some organizations interviewed patients who narrated their experiences with a disease/condition. Singh et al.10 recommend that government, professional organizations, and healthcare professionals actively participate on YouTube by developing and uploading such videos to YouTube, as studies have identified that the information provided by such sources is trustworthy. YouTube can become a powerful information dissemination platform if healthcare professionals and organizations contribute to it. Only minimal barriers can realistically be applied to video uploads due to the nature of such video hosting portals as YouTube. However, there is a need to develop better algorithms and design interfaces to provide results’ information that is accurate. In addition, integrating verified information available from federal agencies such as MedlinePlus, the medical information glossary maintained by the National Library of Medicine, and public report cards generated by federal entities such as Medicare (e.g. Medicare Hospital Compare) might increase the trustworthiness and veracity of the information available. Incorporating features such as crowdsourcing, whereby current YouTube users are encouraged to report inaccurate and misleading information, could be another strategy for preventing the spread of misinformation. Interfaces that integrate YouTube videos with the references from clinical research studies for the claims made could also enhance the dissemination of accurate information. Anecdotal information from patients is becoming increasingly available to the public in the form of YouTube videos and as discussion posts on peer-support groups.36 Studies have indicated that when making treatment choices, such anecdotal information is heavily weighed by the health consumers.37 Hence, there is also a need to integrate consumers’ narrative accounts into the decision-making process by presenting anecdotal information in ways that complement the quantitative quality information provided by federal entities. Seeking, filtering, and integrating useful, trustworthy, and valid sources of health information, a complex cognitive activity in itself is becoming increasingly difficult, compounded by the increasing amount of medical information available. Healthcare consumers need to develop skills for accessing, comprehending, and effectively using the information available on the Internet. In addition, as consumers use this information as a source for making decisions, issues such as trust and credibility become important considerations. As this review suggests, there is a need to understand how consumers make health care–related decisions and to identify effective ways for disseminating trustworthy information on the Internet so that it becomes an effective part of their healthcare decision-making process.
Conclusion The Internet provides many opportunities for consumers to gain information on health care. These resources can provide novel ways for consumers to gain information and share their experiences of investigation, diagnosis, and treatment of disease.38–41 Studies on the use and implications of YouTube for healthcare communication are still in the nascent stage. As seen from this review, YouTube holds a vast amount of data pertaining to health care. Some of this information is misleading or incorrect. With the results of recent surveys suggesting that YouTube is ranked as the third most accessed website worldwide, the probability of disseminating such misleading information to healthcare consumers is high and can have catastrophic implications. There is a significant lack of research on developing interventions for the effective dissemination of YouTube videos for healthcare communication. YouTube could be used as a very effective information resource if guided search practices are followed. Interventions need to be developed to assure that consumers are able to critically
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assimilate the information posted on YouTube with more authoritative information sources to make effective healthcare decisions. To address this issue, we call for further cross-disciplinary research focusing on human factors engineering and user-centered design to develop interventions that support effective filtering and integration of useful, trustworthy, and valid sources of health information on social media, including YouTube. Acknowledgements All the authors have contributed to the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content; and (3) have made final approval of the version to be submitted. All persons who qualify as authors have been listed in this article.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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