The use of social media for health research purposes: Scoping review.

  • Deep Digital Phenotyping Research Unit
  • Competence Center for Methodology and Statistics
March 18, 2021 By:
  • Bour C
  • Schmitz S
  • Ahne A
  • Perchoux C
  • Dessenne C
  • Fagherazzi G.

Background: As social media are increasingly used worldwide, more and more scientists are relying on them for their healthrelated projects. But so far, social media features, methodologies and ethical issues are unclear with no overview of this relatively young field of research.
Objective: This scoping review aimed to provide an evidence map of the different uses of social media for health research
purposes, their fields of applications and their analysis methods.
Methods: We followed the scoping review methodologies developed by Arksey and O’Malley and the Joanna Briggs Institute. After developing search strategies based on keywords (e.g., Social media, health research), comprehensive searches were conducted in Pubmed/MEDLINE and Web of Science databases. We limited the search strategies to documents written in English and published between 2005/01/01 and 2020/04/09. After removing duplicates, articles were screened at title/abstract and at full text level by two independent reviewers. One reviewer extracted data that were descriptively analyzed to map the available evidence.
Results: After screening 1237 titles and abstracts and 407 full-texts, 268 unique papers were included, dating from 2009 to 2020 with an average annual growth rate of 32.71% for the 2009-2019 period. Studies mainly came from America (64.55%, N=173/268, including 151 from the USA). Articles used machine learning or data mining techniques (N=60/268) to analyze the data, discussed opportunities and limitations of the use of social media for research (N=59/268), assessed the feasibility of recruitment strategies (N=45/268) or discussed ethical issues (N=16/268). Communicable (e.g., influenza, N=122/268) and then chronic (e.g., cancer, N=40/268) diseases were the two main areas of interest.
Conclusions: Since their early days, social media have been recognized as a resource of high potential for health research purposes but yet the field is still suffering from a strong heterogeneity in the methodologies used, which prevents the research from comparison and generalisability. For the field to be fully recognized as a valid, complementary approach to more traditional health research study designs, there is now a need for more guidance by types of applications of social media for health research, both from a methodological and an ethical perspective.

2021 Mar. J Med Internet Res. Accepted.
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