This paper is in the following e-collection/theme issue:

Digital Health Reviews (1315) Ethics, Privacy, and Legal Issues (485) Infoveillance, Infodemiology, Digital Disease Surveillance, Infodemic Management (1048) Information Quality in Digital Media (346) Public Health (206) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1659) Infodemiology and Infoveillance (1363) Behavioural Surveillance for Public Health (233) Information Seeking, Information Needs (477)

Published on in Vol 25 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/43060, first published .
Approaches to Research Ethics in Health Research on YouTube: Systematic Review

Approaches to Research Ethics in Health Research on YouTube: Systematic Review

Approaches to Research Ethics in Health Research on YouTube: Systematic Review

Authors of this article:

Joshua P Tanner1 Author Orcid Image ;   Courtney Takats1 Author Orcid Image ;   Hannah Stuart Lathan1 Author Orcid Image ;   Amy Kwan1 Author Orcid Image ;   Rachel Wormer1 Author Orcid Image ;   Diana Romero1 Author Orcid Image ;   Heidi E Jones1, 2 Author Orcid Image
Article Authors Cited by (4) Tweetations (3) Metrics

    Short Paper

    1CUNY Graduate School of Public Health and Health Policy, New York, NY, United States

    2CUNY Institute of Implementation Science in Population Health, New York, NY, United States

    Corresponding Author:

    Heidi E Jones, MPH, PhD

    CUNY Graduate School of Public Health and Health Policy

    55 W. 125th St, #7th Fl

    New York, NY, 10027

    United States

    Phone: 1 646 364 9529

    Email: Heidi.Jones@sph.cuny.edu


    Background: YouTube has become a popular source of health care information, reaching an estimated 81% of adults in 2021; approximately 35% of adults in the United States have used the internet to self-diagnose a condition. Public health researchers are therefore incorporating YouTube data into their research, but guidelines for best practices around research ethics using social media data, such as YouTube, are unclear.

    Objective: This study aims to describe approaches to research ethics for public health research implemented using YouTube data.

    Methods: We implemented a systematic review of articles found in PubMed, SocINDEX, Web of Science, and PsycINFO following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. To be eligible to be included, studies needed to be published in peer-reviewed journals in English between January 1, 2006, and October 31, 2019, and include analyses on publicly available YouTube data on health or public health topics; studies using primary data collection, such as using YouTube for study recruitment, interventions, or dissemination evaluations, were not included. We extracted data on the presence of user identifying information, institutional review board (IRB) review, and informed consent processes, as well as research topic and methodology.

    Results: This review includes 119 articles from 88 journals. The most common health and public health topics studied were in the categories of chronic diseases (44/119, 37%), mental health and substance use (26/119, 21.8%), and infectious diseases (20/119, 16.8%). The majority (82/119, 68.9%) of articles made no mention of ethical considerations or stated that the study did not meet the definition of human participant research (16/119, 13.4%). Of those that sought IRB review (15/119, 12.6%), 12 out of 15 (80%) were determined to not meet the definition of human participant research and were therefore exempt from IRB review, and 3 out of 15 (20%) received IRB approval. None of the 3 IRB-approved studies contained identifying information; one was explicitly told not to include identifying information by their ethics committee. Only 1 study sought informed consent from YouTube users. Of 119 articles, 33 (27.7%) contained identifying information about content creators or video commenters, one of which attempted to anonymize direct quotes by not including user information.

    Conclusions: Given the variation in practice, concrete guidelines on research ethics for social media research are needed, especially around anonymizing and seeking consent when using identifying information.

    Trial Registration: PROSPERO CRD42020148170; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=148170

    J Med Internet Res 2023;25:e43060

    doi:10.2196/43060

    Keywords

    data anonymization; research ethics; ethics; informed consent; public health; research; social media; YouTube 


    Despite the addition of several social media platforms in the last 5 years, YouTube remains the second-most popular platform [1], with 81% of US adults reporting use in 2021 and 11.7 billion visits per month in 2023 [2]. YouTube is a diverse ecosystem with various contributors, including individual content creators, institutional and organizational accounts, and government accounts [3]. YouTube’s accessibility and ease of use make it a source of health information [4]. An estimated 35% of US residents use web-based sources to self-diagnose a condition [5,6]. YouTube can also be used as a data source, in terms of both content and public response to content (eg, likes and comments), and is being used increasingly by public health researchers to explore trends in viewership, popularity, engagement, and content accuracy [7].

    Many researchers consider social media data as publicly available and thus not requiring ethical oversight. However, examples of breaches in research ethics using social media data have been identified. For example, a review of ethical breach case studies from 2019 described a study that disclosed an individual’s HIV status without the individual’s consent [8]. Further, videos posted do not always clearly indicate consent from individuals included in them. A 2020 study of YouTube videos depicting patients undergoing medical procedures found that none of the 41 videos identified indicated that the patient consented to the recording and posting of the video [9]. Finally, clarity is lacking among social media users on the extent to which the data they provide to social media platforms are public [10]. While numerous previous systematic reviews have explored the quality and accuracy of YouTube’s health-related content [4,11-14], previous reviews have not synthesized findings around approaches to research ethics, an area of increasing attention and concern [15]. We therefore implemented a systematic review of research from 2006 to 2019 investigating the use of YouTube for public health research in terms of approaches to research practices around ethics.


    Search Strategy

    The full search protocol for this review is registered under PROSPERO (CRD42020148170). This review follows PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines [16]. We searched PubMed, SocINDEX, Web of Science, and PsycINFO on November 6 and 7, 2019, using the search query ([“Social media” OR twitter OR tweet* OR facebook OR instagram OR youtube OR tumblr OR reddit OR “web 2.0” OR “public comments” OR hashtag*] and [“public health” OR “health research” OR “community health” OR “population health”]). We focused on YouTube only; findings for X (formerly Twitter) and Facebook are presented elsewhere [17,18].

    Eligibility Criteria

    English-language peer-reviewed journal articles concerning health and YouTube published between January 1, 2006 (the first full year after YouTube’s founding), and October 31, 2019 (when we completed our search), were eligible. This review assessed research ethics practices when using YouTube as a data source; studies using YouTube as a source for an intervention, health information dissemination, or health education and promotion were excluded (Textbox 1).

    Textbox 1. Eligibility criteria.

    Inclusion criteria

    • Original research papers
    • English
    • YouTube only
    • Public health– or health-based content
    • Secondary analysis of publicly available data

    Exclusion criteria

    • Systematic review, literature review, opinion paper, and theoretical paper
    • Non-English
    • Facebook, Twitter, Instagram, other social media platforms, and multiple social media platforms (even if YouTube was included)
    • Non–health-related content
    • Analysis and evaluation of social media campaigns, interviews and surveys about social media, marketing or sales research, use of social media for study recruitment only, and studies testing use of social media as intervention

    Study Selection

    After removing duplicates, 2 blinded reviewers screened each title and abstract or full text, if not clear from the title and abstract, for eligibility. We further screened the eligible studies’ reference lists.

    Data Extraction

    We extracted data using a standardized extraction form including fields for publication year, public health topic, outcome type, whether institutional review board (IRB) approval was sought, IRB determination, whether informed consent was sought, and whether identifying information was included (defined as any information that could help identify a YouTube user, content creator, or commenter). We categorized health conditions as noncommunicable and chronic diseases, infectious diseases, mental health and substance use, injury, or other. We categorized outcome types as descriptive (content analysis yielding video themes through quantitative or narrative comparisons), quality (measuring video quality), attitudes (measuring the video’s/commenters’ sentiment), utility (measuring a video’s usefulness to viewers), or other (behavioral analysis, accessibility, etc). JPT performed the initial data extraction, and HEJ reviewed all data for accuracy. As this review focuses on ethical research processes, we did not include an assessment of quality or risk of bias.

    Analysis Presentation

    We report the frequency and percentage of research ethics practices overall and by whether they included user-identifying information. We provide references in the main text for results with ≤10 studies to facilitate readability. Those with >10 studies in a result can be verified in Table S1 in Multimedia Appendix 1.


    After removing duplicates, we reviewed 5115 unique studies, of which 119 met eligibility criteria (Figure 1) [19-137].

    ‎
    Figure 1. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow chart of systematic review of public health studies of YouTube (2006-2019).

    Topic and Outcome Measures

    The most common health topic was noncommunicable or chronic disease (44/119, 37%), followed by mental health and substance use (26/119, 21.8%) and infectious disease (20/119, 16.8%). Within chronic diseases, cancer was the most prevalent (10/119, 8.4%) [25,28,29,35,58-60,79,98,124], while vaccination was the most prevalent topic among articles on infectious disease (7/119, 5.9%) [21,34,52,57,62,85,136]. Most studies used content analysis to describe the videos’ themes (89/119, 74.8%), quality or utility (35/119, 29.4%), and public opinion or attitudes (31/119, 26.1%; Table S1 in Multimedia Appendix 1).

    Ethical Considerations

    Most (82/119, 68.9%) articles did not mention ethical considerations in the study design or data collection, or the authors stated that their study did not meet the definition of human participant research (16/119, 13.4%). Of the 15 (12.6%) sent to the IRB for review, 12 (10.1%) were deemed to be nonhuman research by the IRB, and 3 (2.5%) [57,65,111] received IRB approval (Table 1). None of the 3 IRB-approved studies contained identifying information, one having been explicitly instructed not to include identifying information by their ethics committee [57].

    Table 1. Frequency of research ethics practices by the presence of identifying information.
    Research ethics practiceTotal (N=119), n (%)Included identifying information (n=33), n (%)Did not include identifying information (n=86), n (%)
    Sought IRBa review

    		Yes, IRB deemed not human participants research12 (10.1)3 (9.1)9 (10.5)

    		Yes, IRB approved3 (2.5)0 (0)3 (3.5)

    		Not clear, authors deemed not human participants research16 (13.4)3 (9.1)13 (15.1)

    		No88 (73.9)27 (81.8)61 (70.9)
    Sought informed consent

    		Yes1 (0.8)1 (3)0 (0)

    		No118 (99.2)32 (97)86 (100)

    aIRB: institutional review board.

    In total, 33 (27.7%) studies contained identifying information, which included video titles (18/119, 15.1%), direct quotations of comments or videos (14/119, 11.8%), URLs for videos (12/119, 10.1%), names of video content creators (7/119, 5.9%) [29,53,84,103,126,127,131], and video screen captures (2/119, 1.7%) [29,127]. One study that included direct quotes excluded usernames in an attempt to anonymize the data, stating they did so because the YouTube users were unable to consent to participation in the study [108]. Two additional studies chose not to include videos that depicted perceived adolescents or children [84,102].

    One study on diabetes burnout in people with type 1 diabetes with personal stories from individuals with type 1 diabetes in the videos sought informed consent from content creators through email or by commenting on the video itself [19]. The study used an opt-out solicitation and received no requests to be removed from the study.


    Overview

    We found some variation in research practice around ethical review for studies using YouTube data. Nearly three-quarters did not seek IRB review, considering YouTube publicly available data and thus not human participant research. Nevertheless, 12.6% (15/119) sought ethical review. Further, some researchers chose to anonymize their presentation of results or not to include identifiable content from children or adolescents; one study in Canada indicated that their ethical review board required content anonymization [57]. This variation in practice suggests ambiguity around privacy, personal identifiers, consent, and definitions of nonhuman participant research when using YouTube data.

    This systematic review has several limitations. The review includes articles published from 2006 to 2019; as such, any changes to and evolution of the ethical and methodological use of social media data for research since 2019 are not captured. Additionally, given the breadth of public health research and the inclusion of only English-language articles, some studies may have been missed.

    Given the continual debate about the definition and complexity of “public space” in social media and the shift away from a binary view of public versus private [138,139], and toward a consideration of intended use and “imagined audiences” [140], clearer guidelines are needed in social media research ethics. When studies include videos of real people sharing their personal health-related experiences, the notions of privacy and consent are blurred, with the possibility of social harm to nonconsented individuals.

    Conclusions

    Clearer ethical guidelines around the use of “publicly available” social media data in scientific research are needed.

    Acknowledgments

    We would like to thank Sarah Pickering, MPH, Jessie Losch, MPH, and Rebecca Berger, MPH, graduate students at the City University of New York (CUNY) School of Public Health, who contributed to the refinement of the data extraction forms and data extraction. This study was partially funded by an anonymous private foundation. The foundation did not play any role in the implementation of the systematic review or manuscript preparation. The authors have no financial disclosures to report.

    Conflicts of Interest

    None declared.

    Multimedia Appendix 1

    Individual listing of public health topic, whether study included identifying information, IRB processes of included articles (n=119) for systematic review of public health studies of YouTube 2006-2019.

    XLSX File (Microsoft Excel File), 19 KB
    Multimedia Appendix 2

    PRISMA checklist.

    DOCX File , 32 KB
    1. Global Media Insight. YouTube User Statistics. 2023. URL: https://www.globalmediainsight.com/blog/youtube-users-statistics/#stat [accessed 2023-03-19]
    2. Social Media Fact Sheet. Pew Research Center. 2023. URL: https://www.pewresearch.org/internet/fact-sheet/social-media/ [accessed 2023-03-19]
    3. Social Blade. Top 100 Influential YouTube Channels. 2023. URL: https://socialblade.com/youtube/top/100 [accessed 2023-03-19]
    4. Madathil KC, Rivera-Rodriguez AJ, Greenstein JS, Gramopadhye AK. Healthcare information on YouTube: a systematic review. Health Informatics J. 2015;21(3):173-194. [FREE Full text] [CrossRef] [Medline]
    5. Lee HY, Jin SW, Henning-Smith C, Lee J, Lee J. Role of health literacy in health-related information-seeking behavior online: cross-sectional study. J Med Internet Res. 2021;23(1):e14088. [FREE Full text] [CrossRef] [Medline]
    6. Fox S, Duggan M. Health Online. Pew Research Center. 2013. URL: https://www.pewresearch.org/internet/2013/01/15/health-online-2013/ [accessed 2023-03-19]
    7. Chou WYS, Gaysynsky A. A prologue to the special issue: health misinformation on social media. Am J Public Health. 2020;110(S3):S270-S272. [FREE Full text] [CrossRef] [Medline]
    8. Chiauzzi E, Wicks P. Digital trespass: ethical and terms-of-use violations by researchers accessing data from an online patient community. J Med Internet Res. 2019;21(2):e11985. [FREE Full text] [CrossRef] [Medline]
    9. O'Sullivan J, McCarrick C, Tierney P, O'Connor DB, Collins J, Franklin R. Identification of informed consent in patient videos on social media: prospective study. JMIR Med Educ. 2020;6(2):e14081. [FREE Full text] [CrossRef] [Medline]
    10. Rainie L. Americans' complicated feelings about social media in an era of privacy concerns. Pew Research Center. 2018. URL: https:/​/www.​pewresearch.org/​short-reads/​2018/​03/​27/​americans-complicated-feelings-about-social-media-in-an-era-of-privacy-concerns/​ [accessed 2023-08-29]
    11. Borges do Nascimento IJ, Pizarro AB, Almeida JM, Azzopardi-Muscat N, Gonçalves MA, Björklund M, et al. Infodemics and health misinformation: a systematic review of reviews. Bull World Health Organ. 2022;100(9):544-561. [FREE Full text] [CrossRef] [Medline]
    12. Skafle I, Nordahl-Hansen A, Quintana DS, Wynn R, Gabarron E. Misinformation about COVID-19 vaccines on social media: rapid review. J Med Internet Res. 2022;24(8):e37367. [FREE Full text] [CrossRef] [Medline]
    13. Sampson M, Cumber J, Li C, Pound CM, Fuller A, Harrison D. A systematic review of methods for studying consumer health YouTube videos, with implications for systematic reviews. PeerJ. 2013;1:e147. [FREE Full text] [CrossRef] [Medline]
    14. Drozd B, Couvillon E, Suarez A. Medical YouTube videos and methods of evaluation: literature review. JMIR Med Educ. 2018;4(1):e3. [FREE Full text] [CrossRef] [Medline]
    15. Susser D. Ethical considerations for digitally targeted public health interventions. Am J Public Health. 2020;110(S3):S290-S291. [FREE Full text] [CrossRef] [Medline]
    16. Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche PC, Ioannidis JPA, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med. 2009;6(7):e1000100. [FREE Full text] [CrossRef] [Medline]
    17. Lathan HS, Kwan A, Takats C, Tanner JP, Wormer R, Romero D, et al. Ethical considerations and methodological uses of Facebook data in public health research: a systematic review. Soc Sci Med. 2023;322:115807. [FREE Full text] [CrossRef] [Medline]
    18. Takats C, Kwan A, Wormer R, Goldman D, Jones HE, Romero D. Ethical and methodological considerations of Twitter data for public health research: systematic review. J Med Internet Res. 2022;24(11):e40380. [FREE Full text] [CrossRef] [Medline]
    19. Abdoli S, Hessler D, Vora A, Smither B, Stuckey H. Descriptions of diabetes burnout from individuals with type 1 diabetes: an analysis of YouTube videos. Diabet Med. 2020;37(8):1344-1351. [CrossRef] [Medline]
    20. Abedin T, Ahmed S, Al Mamun M, Ahmed SW, Newaz S, Rumana N, et al. YouTube as a source of useful information on diabetes foot care. Diabetes Res Clin Pract. 2015;110(1):e1-e4. [CrossRef] [Medline]
    21. Ache KA, Wallace LS. Human papillomavirus vaccination coverage on YouTube. Am J Prev Med. 2008;35(4):389-392. [CrossRef] [Medline]
    22. Adorisio O, Silveri M, De Peppo F, Ceriati E, Marchetti P, De Goyet JDV. YouTube and pediatric surgery. What is the danger for parents? Eur J Pediatr Surg. 2015;25(2):203-205. [CrossRef] [Medline]
    23. Athanasopoulou C, Suni S, Hätönen H, Apostolakis I, Lionis C, Välimäki M. Attitudes towards schizophrenia on YouTube: a content analysis of Finnish and Greek videos. Inform Health Soc Care. 2016;41(3):307-324. [CrossRef] [Medline]
    24. Backinger CL, Pilsner AM, Augustson EM, Frydl A, Phillips T, Rowden J. YouTube as a source of quitting smoking information. Tob Control. 2011;20(2):119-122. [CrossRef] [Medline]
    25. Basch CH, Hillyer GC, Reeves R, Basch CE. Analysis of YouTube videos related to bowel preparation for colonoscopy. World J Gastrointest Endosc. 2014;6(9):432-435. [FREE Full text] [CrossRef] [Medline]
    26. Basch CH, Ruggles KV, Berdnik A, Basch CE. Characteristics of the most viewed YouTube™ videos related to bullying. Int J Adolesc Med Health. 2015;29(4):20150063. [CrossRef] [Medline]
    27. Basch CH, Basch CE, Ruggles KV, Hammond R. Coverage of the Ebola virus disease epidemic on YouTube. Disaster Med Public Health Prep. 2015;9(5):531-535. [CrossRef] [Medline]
    28. Basch CH, Hillyer GC, MacDonald ZL, Reeves R, Basch CE. Characteristics of YouTube videos related to mammography. J Cancer Educ. 2015;30(4):699-703. [CrossRef] [Medline]
    29. Basch CH, Basch CE, Hillyer GC, Reeves R. YouTube videos related to skin cancer: a missed opportunity for cancer prevention and control. JMIR Cancer. 2015;1(1):e1. [FREE Full text] [CrossRef] [Medline]
    30. Basch CH, Mongiovi J, Hillyer GC, MacDonald Z, Basch CE. YouTube videos related to e-cigarette safety and related health risks: implications for preventing and emerging epidemic. Public Health. 2016;132:57-59. [CrossRef] [Medline]
    31. Basch CH, Hillyer GC, Berdnik A, Basch CE. YouTube™ videos related to human papillomavirus: the need for professional communication. Int J Adolesc Med Health. 2016;30(1):20150122. [CrossRef] [Medline]
    32. Basch CH, Mongiovi J, Berdnik A, Basch CE. The most widely viewed YouTube videos with content related to multivitamins. Health Promot Perspect. 2016;6(4):213-216. [FREE Full text] [CrossRef] [Medline]
    33. Basch CH, Fung ICH, Berdnik A, Basch CE. Widely viewed english language YouTube videos relating to diabetic retinopathy: a cross-sectional study. JMIR Diabetes. 2016;1(2):e6. [FREE Full text] [CrossRef] [Medline]
    34. Basch CH, Zybert P, Reeves R, Basch CE. What do popular YouTube videos say about vaccines? Child Care Health Dev. 2017;43(4):499-503. [CrossRef] [Medline]
    35. Basch CH, Kecojevic A, Berdnik A, Cadorett V, Basch CE. An analysis of widely viewed YouTube videos on anal cancer. Int J Prev Med. 2017;8:74. [FREE Full text] [CrossRef] [Medline]
    36. Basch CH, Jackson AM, Yin J, Hammond RN, Adhikari A, Fung ICH. English language YouTube videos as a source of lead poisoning-related information: a cross-sectional study. Int J Occup Environ Health. 2017;23(3):222-227. [FREE Full text] [CrossRef] [Medline]
    37. Basch CH, Mullican LA, Boone KD, Yin J, Berdnik A, Eremeeva ME, et al. Lyme disease and YouTube : a cross-sectional study of video contents. Osong Public Health Res Perspect. 2017;8(4):289-292. [FREE Full text] [CrossRef] [Medline]
    38. Basch CH, Fung ICH, Menafro A, Mo C, Yin J. An exploratory assessment of weight loss videos on YouTube™. Public Health. 2017;151:31-38. [CrossRef] [Medline]
    39. Basch CH, Fung ICH, Hammond RN, Blankenship EB, Tse ZTH, Fu KW, et al. Zika virus on YouTube: an analysis of english-language video content by source. J Prev Med Public Health. 2017;50(2):133-140. [FREE Full text] [CrossRef] [Medline]
    40. Basch CH, Hillyer GC, Garcia P, Basch CE. Clostridium difficile on YouTube: a need for greater focus on prevention. J Infect Public Health. 2018;11(2):290-293. [FREE Full text] [CrossRef] [Medline]
    41. Basch CH, Blankenship EB, Fung ICH, Yarborough CC, Rustin RC, Yin J. Eastern equine encephalitis and YouTube videos: a content analysis. Infect Dis Health Elsevier BV. 2018;23(4):197-202. [CrossRef]
    42. Basch CH, Brown AA, Fullwood MD, Clark A, Fung ICH, Yin J. YouTube as a source of information on skin bleaching: a content analysis. Clin Exp Dermatol. 2018;43(4):399-403. [CrossRef] [Medline]
    43. Basch CH, Yin J, Kollia B, Adedokun A, Trusty S, Yeboah F, et al. Public online information about tinnitus: a cross-sectional study of YouTube videos. Noise Health. 2018;20(92):1-8. [FREE Full text] [CrossRef] [Medline]
    44. Basch CH, Yin J, Walker ND, de Leon AJ, Fung ICH. TMJ online: investigating temporomandibular disorders as "TMJ" on YouTube. J Oral Rehabil. 2018;45(1):34-40. [CrossRef] [Medline]
    45. Basch CH, Mouser C, Clark A. Distracted driving on YouTube: implications for adolescents. Int J Adolesc Med Health. 2017;31(2):20160158. [CrossRef] [Medline]
    46. Basch CH, Hillyer GC, Garcia P, Basch CE. Content of widely viewed YouTube videos about celiac disease. Public Health. 2019;167:147-151. [CrossRef] [Medline]
    47. Beydilli H, Serinken M, Eken C, Elicabuk H, Dal O, Acar E, et al. The validity of YouTube videos on pediatric BLS and CPR. Telemed J E Health. 2016;22(2):165-169. [CrossRef] [Medline]
    48. Bicquelet A. Using online mining techniques to inform formative evaluations: an analysis of YouTube video comments about chronic pain. Evaluation. 2017;23(3):323-338. SAGE Publications Ltd. [CrossRef]
    49. Biggs TC, Bird JH, Harries PG, Salib RJ. YouTube as a source of information on rhinosinusitis: the good, the bad and the ugly. J Laryngol Otol. 2013;127(8):749-754. [CrossRef] [Medline]
    50. Bora K, Das D, Barman B, Borah P. Are internet videos useful sources of information during global public health emergencies? A case study of YouTube videos during the 2015-16 zika virus pandemic. Pathog Glob Health. 2018;112(6):320-328. [FREE Full text] [CrossRef] [Medline]
    51. Borgmann H, Salem J, Baunacke M, Boehm K, Groeben C, Schmid M, et al. Mapping the landscape of urology: a new media-based cross-sectional analysis of public versus academic interest. Int J Urol. 2018;25(5):421-428. [CrossRef] [Medline]
    52. Briones R, Nan X, Madden K, Waks L. When vaccines go viral: an analysis of HPV vaccine coverage on YouTube. Health Commun. 2012;27(5):478-485. [CrossRef] [Medline]
    53. Bromberg JE, Augustson EM, Backinger CL. Portrayal of smokeless tobacco in YouTube videos. Nicotine Tob Res. 2012;14(4):455-462. [FREE Full text] [CrossRef] [Medline]
    54. Butler DP, Perry F, Shah Z, Leon-Villapalos J. The quality of video information on burn first aid available on YouTube. Burns. 2013;39(5):856-859. [FREE Full text] [CrossRef] [Medline]
    55. Camm CF, Sunderland N, Camm AJ. A quality assessment of cardiac auscultation material on YouTube. Clin Cardiol. 2013;36(2):77-81. [FREE Full text] [CrossRef] [Medline]
    56. Carroll MV, Shensa A, Primack BA. A comparison of cigarette- and hookah-related videos on YouTube. Tob Control. 2013;22(5):319-323. [FREE Full text] [CrossRef] [Medline]
    57. Chin A, Keelan J, Tomlinson G, Pavri-Garcia V, Wilson K, Chignell M. Automated delineation of subgroups in web video: a medical activism case study. J Comput Mediat Commun. 2010;15(3):447-464. [FREE Full text] [CrossRef]
    58. Chou WYS, Hunt Y, Folkers A, Augustson E. Cancer survivorship in the age of YouTube and social media: a narrative analysis. J Med Internet Res. 2011;13(1):e7. [FREE Full text] [CrossRef] [Medline]
    59. Hillyer GC, Basch CH, Guerro S, Sackstein P, Basch CE. YouTube videos as a source of information about mastectomy. Breast J. 2019;25(2):349-350. [CrossRef] [Medline]
    60. Clerici CA, Veneroni L, Bisogno G, Trapuzzano A, Ferrari A. 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. [CrossRef] [Medline]
    61. Coates AE, Hardman CA, Halford JCG, Christiansen P, Boyland EJ. Food and beverage cues featured in YouTube videos of social media influencers popular with children: an exploratory study. Front Psychol. 2019;10:2142. [FREE Full text] [CrossRef] [Medline]
    62. Covolo L, Ceretti E, Passeri C, Boletti M, Gelatti U. What arguments on vaccinations run through YouTube videos in Italy? A content analysis. Hum Vaccin Immunother. 2017;13(7):1693-1699. [FREE Full text] [CrossRef] [Medline]
    63. Delli K, Livas C, Vissink A, Spijkervet FKL. Is YouTube useful as a source of information for Sjögren's syndrome? Oral Dis. 2016;22(3):196-201. [CrossRef] [Medline]
    64. Dubey D, Amritphale A, Sawhney A, Dubey D, Srivastav N. Analysis of YouTube as a source of information for west nile virus infection. Clin Med Res. 2014;12(3-4):129-132. [FREE Full text] [CrossRef] [Medline]
    65. Ehrlich MS, Richard MJ, Woodward JA. Blepharospasm cause and treatment: YouTube as a reflection of current popular thought. Ophthalmic Plast Reconstr Surg. 2012;28(6):475-476. [CrossRef] [Medline]
    66. ElKarmi R, Hassona Y, Taimeh D, Scully C. YouTube as a source for parents' education on early childhood caries. Int J Paediatr Dent. 2017;27(6):437-443. [CrossRef] [Medline]
    67. Elkin L, Thomson G, 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. England. [CrossRef] [Medline]
    68. Fat MJL, Sell E, Barrowman N, Doja A. Public perception of tourette syndrome on YouTube. J Child Neurol. 2012;27(8):1011-1016. [CrossRef] [Medline]
    69. Forsyth SR, Malone RE. "I'll be your cigarette--light me up and get on with it": examining smoking imagery on YouTube. Nicotine Tob Res. 2010;12(8):810-816. [FREE Full text] [CrossRef] [Medline]
    70. Freeman B, Chapman S. Is "YouTube" telling or selling you something? Tobacco content on the YouTube video-sharing website. Tob Control. 2007;16(3):207-210. [FREE Full text] [CrossRef] [Medline]
    71. Fullwood MD, Kecojevic A, Basch CH. Examination of YouTube videos related to synthetic cannabinoids. Int J Adolesc Med Health. 2016;30(4):20160073. [FREE Full text] [CrossRef] [Medline]
    72. Gao X, Hamzah SH, Yiu CKY, McGrath C, King NM. Dental fear and anxiety in children and adolescents: qualitative study using YouTube. J Med Internet Res. 2013;15(2):e29. [FREE Full text] [CrossRef] [Medline]
    73. Garg N, Venkatraman A, Pandey A, Kumar N. YouTube as a source of information on dialysis: a content analysis. Nephrology (Carlton). 2015;20(5):315-320. [CrossRef] [Medline]
    74. Gonzalez-Estrada A, Cuervo-Pardo L, Ghosh B, Smith M, Pazheri F, Zell K, et al. Popular on YouTube: a critical appraisal of the educational quality of information regarding asthma. Allergy Asthma Proc. 2015;36(6):e121-e126. [CrossRef] [Medline]
    75. Gooding LF, Gregory D. Descriptive analysis of YouTube music therapy videos. J Music Ther. 2011;48(3):357-369. [CrossRef] [Medline]
    76. Guy MC, Helt J, Palafox S, Green K, Soule EK, Maloney SF, et al. Orthodox and unorthodox uses of electronic cigarettes: a surveillance of YouTube video content. Nicotine Tob Res. 2019;21(10):1378-1384. [FREE Full text] [CrossRef] [Medline]
    77. Hamzah HS, Gao X, Yiu CKY, McGrath C, King NM. Managing dental fear and anxiety in pediatric patients: a qualitative study from the public's perspective. Pediatr Dent. 2014;36(1):29-33. [Medline]
    78. Hansen C, Interrante JD, Ailes EC, Frey MT, Broussard CS, Godoshian VJ, et al. Assessment of YouTube videos as a source of information on medication use in pregnancy. Pharmacoepidemiol Drug Saf. 2016;25(1):35-44. [FREE Full text] [CrossRef] [Medline]
    79. Hassona Y, Taimeh D, Marahleh A, Scully C. YouTube as a source of information on mouth (oral) cancer. Oral Dis. 2016;22(3):202-208. [CrossRef] [Medline]
    80. Haymes AT, Harries V. 'How to stop a nosebleed': an assessment of the quality of epistaxis treatment advice on YouTube. J Laryngol Otol. 2016;130(8):749-754. [CrossRef] [Medline]
    81. Hossler EW, Conroy MP. YouTube as a source of information on tanning bed use. Arch Dermatol. 2008;144(10):1395-1396. [FREE Full text] [CrossRef] [Medline]
    82. Huang J, Kornfield R, Emery SL. 100 million views of electronic cigarette YouTube videos and counting: quantification, content evaluation, and engagement levels of videos. J Med Internet Res. 2016;18(3):e67. [FREE Full text] [CrossRef] [Medline]
    83. Hussin M, Frazier S, Thompson JK. Fat stigmatization on YouTube: a content analysis. Body Image. 2011;8(1):90-92. [FREE Full text] [CrossRef] [Medline]
    84. Kecojevic A, Basch C, Basch C, Kernan W. Pre-exposure prophylaxis YouTube videos: content evaluation. JMIR Public Health Surveill. 2018;4(1):e19. [FREE Full text] [CrossRef] [Medline]
    85. Keelan J, Pavri-Garcia V, Tomlinson G, Wilson K. YouTube as a source of information on immunization: a content analysis. JAMA. 2007;298(21):2482-2484. [FREE Full text] [CrossRef] [Medline]
    86. Kerson TS. Epilepsy postings on YouTube: exercising individuals' and organizations' right to appear. Soc Work Health Care. 2012;51(10):927-943. [CrossRef] [Medline]
    87. Kim K, Paek HJ, Lynn J. A content analysis of smoking fetish videos on YouTube: regulatory implications for tobacco control. Health Commun. 2010;25(2):97-106. [CrossRef] [Medline]
    88. Knight E, Intzandt B, MacDougall A, Saunders TJ. Information seeking in social media: a review of YouTube for sedentary behavior content. Interact J Med Res. 2015;4(1):e3. [FREE Full text] [CrossRef] [Medline]
    89. Knösel M, 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. [FREE Full text] [CrossRef] [Medline]
    90. Knösel M, Jung K, Bleckmann A. YouTube, dentistry, and dental education. J Dent Educ. 2011;75(12):1558-1568. [Medline]
    91. Koller U, Waldstein W, Schatz KD, Windhager R. YouTube provides irrelevant information for the diagnosis and treatment of hip arthritis. Int Orthop. 2016;40(10):1995-2002. [FREE Full text] [CrossRef] [Medline]
    92. Kollia B, Kamowski-Shakibai MT, Basch CH, Clark A. Sources and content of popular online videos about autism spectrum disorders. Health Promot Perspect. 2017;7(4):238-244. [FREE Full text] [CrossRef] [Medline]
    93. Kollia B, Basch CH, Mouser C, Deleon AJ. Assessment of information on concussion available to adolescents on social media. Int J Prev Med. 2018;9:19. [FREE Full text] [CrossRef] [Medline]
    94. Kumar N, Pandey A, Venkatraman A, Garg N. Are video sharing web sites a useful source of information on hypertension? J Am Soc Hypertens. 2014;8(7):481-490. [FREE Full text] [CrossRef] [Medline]
    95. Lewis SP, Heath NL, Sornberger MJ, Arbuthnott AE. Helpful or harmful? An examination of viewers' responses to nonsuicidal self-injury videos on YouTube. J Adolesc Health. 2012;51(4):380-385. [FREE Full text] [CrossRef] [Medline]
    96. Li M, Yan S, Yang D, Li B, Cui W. YouTube™ as a source of information on food poisoning. BMC Public Health. 2019;19(1):952. [FREE Full text] [CrossRef] [Medline]
    97. Lo AS, Esser MJ, Gordon KE. YouTube: a gauge of public perception and awareness surrounding epilepsy. Epilepsy Behav. 2010;17(4):541-545. [CrossRef] [Medline]
    98. Loeb S, Sengupta S, Butaney M, Macaluso JN, Czarniecki SW, Robbins R, et al. Dissemination of misinformative and biased information about prostate cancer on YouTube. Eur Urol. 2019;75(4):564-567. [CrossRef] [Medline]
    99. Luo C, Zheng X, Zeng DD, Leischow S. Portrayal of electronic cigarettes on YouTube. BMC Public Health. 2014;14:1028. [FREE Full text] [CrossRef] [Medline]
    100. Lynch M. Familiarizing with toy food: preliminary research and future directions. J Nutr Educ Behav. 2012;44(6):639-643. [CrossRef] [Medline]
    101. MacLean SA, Basch CH, Reeves R, Basch CE. Portrayal of generalized anxiety disorder in YouTube™ videos. Int J Soc Psychiatry. 2017;63(8):792-795. [CrossRef] [Medline]
    102. McAdam K, Warrington A, Hughes A, Adams D, Margham J, Vas C, et al. Use of social media to establish vapers puffing behaviour: findings and implications for laboratory evaluation of e-cigarette emissions. Regul Toxicol Pharmacol. 2019;107:104423. [FREE Full text] [CrossRef] [Medline]
    103. Mitchell IA, Schuster ALR, Lynch T, Smith KC, Bridges JFP, Aslakson RA. Why don't end-of-life conversations go viral? A review of videos on YouTube. BMJ Support Palliat Care. 2017;7(2):197-204. [CrossRef] [Medline]
    104. Mukewar S, Mani P, Wu X, Lopez R, Shen B. YouTube® and inflammatory bowel disease. J Crohn's Colitis. 2013;7(5):392-402. [FREE Full text] [CrossRef]
    105. Murugiah K, Vallakati A, Rajput K, Sood A, Challa NR. YouTube as a source of information on cardiopulmonary resuscitation. Resuscitation. 2011;82(3):332-334. [CrossRef] [Medline]
    106. Nagpal SJS, Karimianpour A, Mukhija D, Mohan D, Brateanu A. YouTube videos as a source of medical information during the Ebola hemorrhagic fever epidemic. Springerplus. 2015;4:457. [FREE Full text] [CrossRef] [Medline]
    107. Nasri L, Baghersad M, Gruss R, Marucchi NSW, Abrahams AS, Ehsani JP. An investigation into online videos as a source of safety hazard reports. J Safety Res. 2018;65:89-99. [FREE Full text] [CrossRef] [Medline]
    108. Owczarczak-Garstecka SC, Watkins F, Christley R, Yang H, Westgarth C. Exploration of perceptions of dog bites among YouTube™ viewers and attributions of blame. Anthrozoös. 2018;31(5):537-549. Routledge. [CrossRef]
    109. Pandey A, Patni N, Singh M, Sood A, Singh G. YouTube as a source of information on the H1N1 influenza pandemic. Am J Prev Med. 2010;38(3):e1-e3. [CrossRef] [Medline]
    110. Pathak R, Poudel DR, Karmacharya P, Pathak A, Aryal MR, Mahmood M, et al. YouTube as a source of information on Ebola virus disease. N Am J Med Sci. 2015;7(7):306-309. [FREE Full text] [CrossRef] [Medline]
    111. Paul J, Boraas CM, Duvet M, Chang JC. YouTube and the single-rod contraceptive implant: a content analysis. J Fam Plann Reprod Health Care. 2017;43(3):195-200. [FREE Full text] [CrossRef] [Medline]
    112. Primack BA, Colditz JB, Pang KC, Jackson KM. Portrayal of alcohol intoxication on YouTube. Alcohol Clin Exp Res. 2015;39(3):496-503. [FREE Full text] [CrossRef] [Medline]
    113. Richardson CG, Vettese L, Sussman S, Small SP, Selby P. An investigation of smoking cessation video content on YouTube. Subst Use Misuse. 2011;46(7):893-897. [FREE Full text] [CrossRef] [Medline]
    114. Richardson A, Vallone DM. YouTube: a promotional vehicle for little cigars and cigarillos? Tob Control. 2014;23(1):21-26. [CrossRef] [Medline]
    115. Romito LM, Hurwich RA, Eckert GJ. A snapshot of the depiction of electronic cigarettes in YouTube videos. Am J Health Behav. 2015;39(6):823-831. [CrossRef] [Medline]
    116. Seeley JS, Wickens CM, Vingilis-Jaremko L, Fleiter J, Yildirim-Yenier Z, Grushka DH, et al. Street racing, stunt driving and ghost riding YouTube videos: a descriptive content analysis. Transp Res Part F Traffic Psychol Behav. 2019;63:283-294. [FREE Full text] [CrossRef]
    117. Seidenberg AB, Rodgers EJ, Rees VW, Connolly GN. Youth access, creation, and content of smokeless tobacco ("dip") videos in social media. J Adolesc Health. 2012;50(4):334-338. [FREE Full text] [CrossRef] [Medline]
    118. Sharma R, Lucas M, Ford P, Meurk C, Gartner CE. YouTube as a source of quit smoking information for people living with mental illness. Tob Control. 2016;25(6):634-637. [CrossRef] [Medline]
    119. Singh AG, Singh S, Singh PP. YouTube for information on rheumatoid arthritis--a wakeup call? J Rheumatol. 2012;39(5):899-903. [FREE Full text] [CrossRef] [Medline]
    120. Sood A, Sarangi S, Pandey A, Murugiah K. YouTube as a source of information on kidney stone disease. Urology. 2011;77(3):558-562. [CrossRef] [Medline]
    121. Sorensen JA, Pusz MD, Brietzke SE. YouTube as an information source for pediatric adenotonsillectomy and ear tube surgery. Int J Pediatr Otorhinolaryngol. 2014;78(1):65-70. [FREE Full text] [CrossRef] [Medline]
    122. Stamelou M, Edwards MJ, Espay AJ, Fung VSC, Hallett M, Lang AE, et al. Movement disorders on YouTube--caveat spectator. N Engl J Med. 2011;365(12):1160-1161. [FREE Full text] [CrossRef] [Medline]
    123. Staunton PF, Baker JF, Green J, Devitt A. Online curves: a quality analysis of scoliosis videos on YouTube. Spine. 2015;40(23):1857-1861. [CrossRef] [Medline]
    124. Steinberg PL, Wason S, Stern JM, Deters L, Kowal B, Seigne J. YouTube as source of prostate cancer information. Urology. 2010;75(3):619-622. [CrossRef] [Medline]
    125. Stephen K, 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. [CrossRef] [Medline]
    126. Strychowsky JE, Nayan S, Farrokhyar F, MacLean J. YouTube: a good source of information on pediatric tonsillectomy? Int J Pediatr Otorhinolaryngol. 2013;77(6):972-975. [FREE Full text] [CrossRef] [Medline]
    127. Syed-Abdul S, Fernandez-Luque L, Jian WS, Li YC, Crain S, Hsu MH, et al. Misleading health-related information promoted through video-based social media: anorexia on YouTube. J Med Internet Res. 2013;15(2):e30. [FREE Full text] [CrossRef] [Medline]
    128. Tang W, Olscamp K, Choi SK, Friedman DB. Alzheimer's disease in social media: content analysis of YouTube videos. Interact J Med Res. 2017;6(2):e19. [FREE Full text] [CrossRef] [Medline]
    129. Thomas M, Mackay S, Salsbury D. Exposure to fire setting behavior on YouTube. J Adolesc Health. 2012;51(1):99-100. [FREE Full text] [CrossRef] [Medline]
    130. Tian Y. Organ donation on web 2.0: content and audience analysis of organ donation videos on YouTube. Health Commun. 2010;25(3):238-246. [CrossRef] [Medline]
    131. Whitehead KA, Bowman B, Raymond G. “Risk factors” in action: the situated constitution of “risk” in violent interactions. Psychol Violence. 2018;8(3):329-338. [CrossRef]
    132. Williams D, Sullivan SJ, Schneiders AG, Ahmed OH, Lee H, Balasundaram AP, et al. Big hits on the small screen: an evaluation of concussion-related videos on YouTube. Br J Sports Med. 2014;48(2):107-111. [FREE Full text] [CrossRef] [Medline]
    133. Wong VSS, Stevenson M, Selwa L. The presentation of seizures and epilepsy in YouTube videos. Epilepsy Behav. 2013;27(1):247-250. [CrossRef] [Medline]
    134. Yaylaci S, Serinken M, Eken C, Karcioglu O, Yilmaz A, Elicabuk H, et al. Are YouTube videos accurate and reliable on basic life support and cardiopulmonary resuscitation? Emerg Med Australas. 2014;26(5):474-477. [FREE Full text] [CrossRef] [Medline]
    135. Yiannakoulias N, Tooby R, Sturrock SL. Celebrity over science? An analysis of lyme disease video content on YouTube. Soc Sci Med. 2017;191:57-60. [FREE Full text] [CrossRef] [Medline]
    136. Yiannakoulias N, Slavik CE, Chase M. Expressions of pro- and anti-vaccine sentiment on YouTube. Vaccine. 2019;37(15):2057-2064. [CrossRef] [Medline]
    137. Yoo JH, Kim J. Obesity in the new media: a content analysis of obesity videos on YouTube. Health Commun. 2012;27(1):86-97. [CrossRef] [Medline]
    138. Berry DM. Internet research: privacy, ethics and alienation: an open source approach. Internet Res. 2004;14(4):323-332. Emerald Group Publishing Limited. [CrossRef]
    139. Convery I, Cox D. A review of research ethics in internet-based research. Pract Res High Educ. 2012;6(1):50-57.
    140. Marwick AE, Boyd D. I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New Media & Society. 2011;13(1):114-133. SAGE Publications. [CrossRef]

    ‎
    IRB: institutional review board
    PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses

    Edited by A Mavragani; submitted 28.09.22; peer-reviewed by M Navarro, S Wang, M Bardus; comments to author 02.03.23; revised version received 01.07.23; accepted 31.08.23; published 04.10.23.

    Copyright

    ©Joshua P Tanner, Courtney Takats, Hannah Stuart Lathan, Amy Kwan, Rachel Wormer, Diana Romero, Heidi E Jones. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 04.10.2023.

    This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.