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

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.

Ethical considerations and methodological uses of Facebook data in public health research: A systematic review.

OBJECTIVE: Since 2016, around seven in 10 adults in the United States (U.S.) actively use Facebook. While much Facebook data is publicly available for research, many users may not understand how their data are being used. We sought to examine to what extent research ethical practices were employed and the research methods being used with Facebook data in public health research. METHODS: We conducted a systematic review (PROSPERO registration CRD42020148170) of social media-based public health research focused on Facebook published in peer-reviewed journals in English between January 1, 2006 and October 31, 2019. We extracted data on ethical practices, methodology, and data analytic approaches. For studies that included verbatim user content, we attempted to locate users/posts within a timed 10-min period. RESULTS: Sixty-one studies met eligibility criteria. Just under half (48%, n = 29) sought IRB approval and six (10%) sought and obtained informed consent from Facebook users. Users' written content appeared in 39 (64%) papers, of which 36 presented verbatim quotes. We were able to locate users/posts within 10 min for half (50%, n = 18) of the 36 studies containing verbatim content. Identifiable posts included content about sensitive health topics. We identified six categories of analytic approaches to using these data: network analysis, utility (i.e., usefulness of Facebook as a tool for surveillance, public health dissemination, or attitudes), associational studies of users' behavior and health outcomes, predictive model development, and two types of content analysis (thematic analysis and sentiment analysis). Associational studies were the most likely to seek IRB review (5/6, 83%), while those of utility (0/4, 0%) and prediction (1/4, 25%) were the least likely to do so. CONCLUSIONS: Stronger guidance on research ethics for using Facebook data, especially the use of personal identifiers, is needed.

Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review.

BACKGROUND: Much research is being carried out using publicly available Twitter data in the field of public health, but the types of research questions that these data are being used to answer and the extent to which these projects require ethical oversight are not clear. OBJECTIVE: This review describes the current state of public health research using Twitter data in terms of methods and research questions, geographic focus, and ethical considerations including obtaining informed consent from Twitter handlers. METHODS: We implemented a systematic review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, of articles published between January 2006 and October 31, 2019, using Twitter data in secondary analyses for public health research, which were found using standardized search criteria on SocINDEX, PsycINFO, and PubMed. Studies were excluded when using Twitter for primary data collection, such as for study recruitment or as part of a dissemination intervention. RESULTS: We identified 367 articles that met eligibility criteria. Infectious disease (n=80, 22%) and substance use (n=66, 18%) were the most common topics for these studies, and sentiment mining (n=227, 62%), surveillance (n=224, 61%), and thematic exploration (n=217, 59%) were the most common methodologies employed. Approximately one-third of articles had a global or worldwide geographic focus; another one-third focused on the United States. The majority (n=222, 60%) of articles used a native Twitter application programming interface, and a significant amount of the remainder (n=102, 28%) used a third-party application programming interface. Only one-third (n=119, 32%) of studies sought ethical approval from an institutional review board, while 17% of them (n=62) included identifying information on Twitter users or tweets and 36% of them (n=131) attempted to anonymize identifiers. Most studies (n=272, 79%) included a discussion on the validity of the measures and reliability of coding (70% for interreliability of human coding and 70% for computer algorithm checks), but less attention was paid to the sampling frame, and what underlying population the sample represented. CONCLUSIONS: Twitter data may be useful in public health research, given its access to publicly available information. However, studies should exercise greater caution in considering the data sources, accession method, and external validity of the sampling frame. Further, an ethical framework is necessary to help guide future research in this area, especially when individual, identifiable Twitter users and tweets are shared and discussed. TRIAL REGISTRATION: PROSPERO CRD42020148170; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=148170.