Garbage in, Garbage Out: Data Collection, Quality Assessment and Reporting Standards for Social Media Data Use in Health Research, Infodemiology and Digital Disease Detection

• Published in: Journal of medical Internet research 2016-02, Vol.18 (2), p.e41-e41
• Main Authors: Kim, Yoonsang, Huang, Jidong, Emery, Sherry
• Format: Article
• Language: English
• Subjects: Application programming interface; Archives & records; Bias; Brands; Coding standards; Communication; Consumers; Data collection; Data Collection - methods; Data entry; Data sources; Disease Outbreaks; Electronic cigarettes; False positive results; Health information; Humans; Internet; Keywords; Language; Machine learning; Mass media; Medical research; Medicine, Experimental; Metadata; News; Online health care information services; Original Paper; Public health; Quality assessment; Quality Assurance, Health Care - methods; Quality management; Retrieval; Search Engine - trends; Slang; Smoking; Social media; Social Media - statistics & numerical data; Social networks; Tobacco; Validity; Wastes
• ISSN: 1438-8871; 1439-4456; 1438-8871
• DOI: 10.2196/jmir.4738

Social 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. We 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. We 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. We 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. This paper sets forth a conceptual framewo