ArticleJournal of medical Internet research2016
Garbage in, Garbage Out: Data Collection, Quality Assessment and Reporting Standards for Social Media Data Use in Health Research, Infodemiology and Digital Disease Detection.
Article in Journal of medical Internet research, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 76 papers, 3 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
76 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Social media for palliative and end-of-life care research: a systematic review.BMJ supportive & palliative care · 2024Pooled it
- Developing a standardized protocol for computational sentiment analysis research using health-related social media data.Journal of the American Medical Informatics Association : JAMIA · 2021Pooled it
- Methods for Coding Tobacco-Related Twitter Data: A Systematic Review.Journal of medical Internet research · 2017Pooled it
- Development of Quality Indicators for the Correct Use of Electronic Medical Records in Primary Care: Modified Delphi Study.JMIR medical informatics · 2026Article
- BiliBili, Douyin and Xiaohongshu as health information platforms for stroke: evaluating information quality and content.Scientific reports · 2025Article
- Plagued by the Past, Pressed by the Present: A One Health Perspective onBiomedicines · 2025Review
- Promotion of Health-Harming Products on Instagram: Characterizing Strategies Boosting Audience Engagement with Cigar Marketing Messages.International journal of environmental research and public health · 2025Article
- AI for Tobacco Control: Identifying Tobacco-Promoting Social Media Content Using Large Language Models.Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco · 2025Article
- Food Access in New York City During the COVID-19 Pandemic: Social Media Monitoring Study.JMIR formative research · 2025Article
- Leveraging social media data to study disease and treatment characteristics of Hodgkin's lymphoma Using Natural Language Processing methods.PLOS digital health · 2025Article
- Content analysis of substance use disorder recovery discourse on Twitter: From personal recovery narratives to marketing of addiction treatment.Alcohol, clinical & experimental research · 2025Article
- A Custom Keyword Tool for Improving the Quality of Social Media Monitoring on Vaccine Safety: A Proof of Concept.International journal of public health · 2025Article
- The Normalization of Vaping on TikTok Using Computer Vision, Natural Language Processing, and Qualitative Thematic Analysis: Mixed Methods Study.Journal of medical Internet research · 2024Article
- ChatGPT for Automated Qualitative Research: Content Analysis.Journal of medical Internet research · 2024Article
- Understanding public perceptions and discussions on diseases involving chronic pain through social media: cross-sectional infodemiology study.BMC musculoskeletal disorders · 2024Article
- REFORMS: Consensus-based Recommendations for Machine-learning-based Science.Science advances · 2024Review
- Examining the Peer-Reviewed Literature on Tobacco-Related Social Media Data: Scoping Review.Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco · 2024Article
- Deciphering Influence on Social Media: A Comparative Analysis of Influential Account Detection Metrics in the Context of Tobacco Promotion.Social media + society · 2024Article
- GLP-1 Receptor Agonists and Related Mental Health Issues; Insights from a Range of Social Media Platforms Using a Mixed-Methods Approach.Brain sciences · 2023Article
- Challenges and best practices for digital unstructured data enrichment in health research: A systematic narrative review.PLOS digital health · 2023Article
16 more citing papers are in PubMed but not listed here.
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Funding
Abstract
backgroundSocial media have transformed the communications landscape. People increasingly obtain news and health information online and via social media. Social media platforms also serve as novel sources of rich observational data for health research (including infodemiology, infoveillance, and digital disease detection detection). While the number of studies using social data is growing rapidly, very few of these studies transparently outline their methods for collecting, filtering, and reporting those data. Keywords and search filters applied to social data form the lens through which researchers may observe what and how people communicate about a given topic. Without a properly focused lens, research conclusions may be biased or misleading. Standards of reporting data sources and quality are needed so that data scientists and consumers of social media research can evaluate and compare methods and findings across studies.
objectiveWe aimed to develop and apply a framework of social media data collection and quality assessment and to propose a reporting standard, which researchers and reviewers may use to evaluate and compare the quality of social data across studies.
methodsWe propose a conceptual framework consisting of three major steps in collecting social media data: develop, apply, and validate search filters. This framework is based on two criteria: retrieval precision (how much of retrieved data is relevant) and retrieval recall (how much of the relevant data is retrieved). We then discuss two conditions that estimation of retrieval precision and recall rely on--accurate human coding and full data collection--and how to calculate these statistics in cases that deviate from the two ideal conditions. We then apply the framework on a real-world example using approximately 4 million tobacco-related tweets collected from the Twitter firehose.
resultsWe developed and applied a search filter to retrieve e-cigarette-related tweets from the archive based on three keyword categories: devices, brands, and behavior. The search filter retrieved 82,205 e-cigarette-related tweets from the archive and was validated. Retrieval precision was calculated above 95% in all cases. Retrieval recall was 86% assuming ideal conditions (no human coding errors and full data collection), 75% when unretrieved messages could not be archived, 86% assuming no false negative errors by coders, and 93% allowing both false negative and false positive errors by human coders.
conclusionsThis paper sets forth a conceptual framework for the filtering and quality evaluation of social data that addresses several common challenges and moves toward establishing a standard of reporting social data. Researchers should clearly delineate data sources, how data were accessed and collected, and the search filter building process and how retrieval precision and recall were calculated. The proposed framework can be adapted to other public social media platforms.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.