Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Sep 28, 2022
Date Accepted: Aug 31, 2023
Approaches to Research Ethics in Health Research on YouTube: A Systematic Review
ABSTRACT
Background:
YouTube has become a popular source of healthcare information reaching an estimated 73% of adults in 2019; 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 in their research, with varying methodologies for sampling, defining measures, and handling ethical concerns.
Objective:
To understand the types of public health research being implemented with YouTube data and the methodologies and research ethics processes applied to this research.
Methods:
We implemented a systematic review of articles that were published in peer reviewed journals in English between January 1, 2006 and October 31, 2019 and concerned public health and social media. We extracted data on yearly publication rate, journal impact factor (IF), sampling methods, outcome types, external validity, measures of popularity, presence of user identifying information, IRB review, and informed consent processes.
Results:
This review includes 119 articles from 88 journals. The number of articles published per year increased from two in 2007 to 16 in 2016 and 2017 and then declined to approximately 10 in 2019. Median IF of the journals publishing these studies has remained below 5.0 since 2009. The most common public health topics studied were in the categories of chronic diseases other than cancers (n=28, 23.5%), infectious diseases (n=20, 16.8%), and substance use (n=19, 16.0%). Most studies used content analysis to describe the themes of videos (n=89, 74.8%), while the remainder reported on the quality or utility of videos (n=35, 29.4%), and public opinion or attitudes about video topics (n=31, 26.1%). Few articles scored poorly for quality metrics (n=22, 18.5%). The quality metric most lacking was “validity of measures” (only 6 of 75 studies [8.0%] achieved this metric), followed by “sufficiently rigorous statistical analysis” (14 of 119 studies [11.8%] achieved this metric). The majority (n=82, 68.9%) of articles made no mention of ethical considerations in study design or data collection. Thirty-three (27.7%) contained identifying information about content creators or video commenters. About a quarter of studies sought IRB approval (n=31, 26.1%), but only one sought informed consent from content creators.
Conclusions:
We found great interest in using YouTube to answer public health questions as indicated by the quantity of articles and the increase in rate of publication over time. However, more careful consideration of study design and thorough validation of outcome measures will strengthen future studies. Debate about the ethics of social media data usage is ongoing. Concrete guidelines on ethical considerations, especially from IRBs, are needed for social media research. Clinical Trial: PROSPERO Registration Number CRD42020148170.
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