The Use Of Social Media To Generate Health Data For Effectiveness Research: A Scoping Review

Abstract

Objectives Explore the use of social media for health data collection in effectiveness research in oncology. Methods We conducted a systematic review of scientific literature to assess health data collected via social media. Literature published in PubMed between January 2010 and April 2015 was included. Three reviewers screened studies for eligibility and extracted data. Based on included articles an explanatory and qualitative analysis was performed. Results Initially the search strategy identified 580 articles. Study inclusion criteria were met by 12 articles based on title and abstract, and by 4 articles based on the full paper. Two additional articles were included after evaluating the reference lists of included hits. Of the 6 included articles, four focused on identifying side effects to cancer treatments by using patient forum websites, one assessed the feasibility of disseminating a quality of life survey via a Facebook support group, and one focused on methodological considerations in analyzing data from Twitter. Several benefits of health data generated via social media were discussed, such as the ability to provide additional information on (unlabelled) side effects, the recruitment of a small sample of patients spread over a relatively wide geographic area, and the possibility to capture patient perspectives that tend to be more difficult to measure in clinical trials. Limitations of using social media to generate health data included validating authenticity of posts and users, duplicate and multiple posts, the volume of data available, selection bias (e.g. sicker or older patients may not be represented on social media) and incompleteness of data on patient characteristics. Conclusions Limited literature is available on the actual use of health data from social media in effectiveness research in oncology. However, the potential of health data collected via social media is of increasing interest in the scientific community and should be further explored.