Background: The internet community has become a significant source for researchers to conduct qualitative studies analyzing users' views, attitudes, and experiences about public health. However, few studies have assessed the ethical issues in qualitative research using social media data.
Objective: This study aims to review the reportage of ethical considerations in qualitative research utilizing social media data on public health care.
Methods: We performed a scoping review of studies mining text from internet communities and published in peer-reviewed journals from 2010 to May 31, 2023. These studies, limited to the English language, were retrieved to evaluate the rates of reporting ethical approval, informed consent, and privacy issues. We searched 5 databases, that is, PubMed, Web of Science, CINAHL, Cochrane, and Embase. Gray literature was supplemented from Google Scholar and OpenGrey websites. Studies using qualitative methods mining text from the internet community focusing on health care topics were deemed eligible. Data extraction was performed using a standardized data extraction spreadsheet. Findings were reported using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines.
Results: After 4674 titles, abstracts, and full texts were screened, 108 studies on mining text from the internet community were included. Nearly half of the studies were published in the United States, with more studies from 2019 to 2022. Only 59.3% (64/108) of the studies sought ethical approval, 45.3% (49/108) mentioned informed consent, and only 12.9% (14/108) of the studies explicitly obtained informed consent. Approximately 86% (12/14) of the studies that reported informed consent obtained digital informed consent from participants/administrators, while 14% (2/14) did not describe the method used to obtain informed consent. Notably, 70.3% (76/108) of the studies contained users' written content or posts: 68% (52/76) contained verbatim quotes, while 32% (24/76) paraphrased the quotes to prevent traceability. However, 16% (4/24) of the studies that paraphrased the quotes did not report the paraphrasing methods. Moreover, 18.5% (20/108) of the studies used aggregated data analysis to protect users' privacy. Furthermore, the rates of reporting ethical approval were different between different countries (P=.02) and between papers that contained users' written content (both direct and paraphrased quotes) and papers that did not contain users' written content (P<.001).
Conclusions: Our scoping review demonstrates that the reporting of ethical considerations is widely neglected in qualitative research studies using social media data; such studies should be more cautious in citing user quotes to maintain user privacy. Further, our review reveals the need for detailed information on the precautions of obtaining informed consent and paraphrasing to reduce the potential bias. A national consensus of ethical considerations such as ethical approval, informed consent, and privacy issues is needed for qualitative research of health care using social media data of internet communities.
Keywords: ethics approval; informed consent; internet community; privacy; qualitative research.
©Yujie Zhang, Jiaqi Fu, Jie Lai, Shisi Deng, Zihan Guo, Chuhan Zhong, Jianyao Tang, Wenqiong Cao, Yanni Wu. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 17.05.2024.