背景:互联网社区已成为研究人员进行定性研究以分析用户观点的重要来源,态度,以及公共卫生方面的经验。然而,很少有研究使用社交媒体数据评估定性研究中的伦理问题。
目的:本研究旨在回顾利用公共医疗保健社交媒体数据进行定性研究的伦理考虑报告。
方法:我们对从互联网社区挖掘文本的研究进行了范围审查,并于2010年至2023年5月31日在同行评审期刊上发表。这些研究,仅限于英语,被检索以评估报告的道德批准率,知情同意,和隐私问题。我们搜索了5个数据库,也就是说,PubMed,WebofScience,CINAHL,科克伦,和Embase。灰色文献从谷歌学者和OpenGrey网站得到补充。使用定性方法从互联网社区中挖掘文本以医疗保健主题为重点的研究被认为是合格的。使用标准化数据提取电子表格进行数据提取。使用PRISMA-ScR(系统审查的首选报告项目和范围审查的Meta分析扩展)指南报告研究结果。
结果:在4674个标题之后,摘要,全文进行了筛选,包括108项有关互联网社区文本挖掘的研究。近一半的研究发表在美国,从2019年到2022年的更多研究。只有59.3%(64/108)的研究寻求伦理批准,45.3%(49/108)提到知情同意,只有12.9%(14/108)的研究明确获得知情同意.报告知情同意的研究中约有86%(12/14)获得了参与者/管理员的数字知情同意。而14%(2/14)没有描述用于获得知情同意的方法。值得注意的是,70.3%(76/108)的研究包含用户的书面内容或帖子:68%(52/76)包含逐字引用,而32%(24/76)的人解释了这些报价是为了防止可追溯性。然而,16%(4/24)的引用引用的研究没有报告的解释方法。此外,18.5%(20/108)的研究使用汇总数据分析来保护用户的隐私。此外,不同国家(P=.02),包含用户书面内容的论文(直译和转述引文)与不包含用户书面内容的论文(P<.001)之间的报告伦理认证率不同.
结论:我们的范围审查表明,在使用社交媒体数据的定性研究中,道德考虑因素的报告被广泛忽略;此类研究在引用用户报价时应更加谨慎,以维护用户隐私。Further,我们的审查显示,我们需要详细的信息,了解获得知情同意的预防措施和解释以减少潜在的偏见.对道德考虑的国家共识,例如道德认可,知情同意,和隐私问题需要使用互联网社区的社交媒体数据进行医疗保健的定性研究。
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.