OBJECTIVES: Social media (SM) platforms generated posts provide a unique and extensive source for generating patient insights and perspectives. This study aims to analyze the trends in using SM for patient insights and perspective generation in recent years.

METHODS: A systematic literature review was conducted in PubMed to identify studies reporting patient insights and perspective generated using SM listening (SML) methodology from January 2012 to March 2023. Only full-text articles published in English were included. Themes that were discussed by patients or their caregivers were analyzed.

RESULTS: Of the 1,088 articles retrieved, 37 studies met the inclusion criteria. Eight studies (22%) analyzed SM posts from one country (US, 50%; France, 25%; UK, 12.5%; Malaysia, 12.5%), 14 (38%) from multi-countries, whereas country was unclear in 15 (40%). Approximately half of the studies (43% [n=16]) analyzed posts from one SM platform, while others utilized multiple platforms. Twitter (57% [n=21]) emerged as the most used SM source for posts, followed by Forums (41% [n=15]), Instagram (32% [n=12]), Facebook (27% [n=10]), Blogs (22% [n=8]), Reddit (16% [n=6]), YouTube (14% [n=5]), and Tumblr (11% [n=4]). The studies comprised several therapeutic areas, including cancers (19% [n=7]), neurological diseases (14% [n=5]), skin problems, inflammatory diseases (each 11% [n=4]), eye diseases (8% [n=3]), genetic, and rare diseases (each 5% [n=2]). Six studies (16%) were about treatments/surgery. Patients discussed dominant themes were treatments/disease management (51% [n=19]), symptoms (43% [n=16]), diagnosis (30% [n=11]), seeking disease information, psychological impact (each 27% [n=10]), quality of life, physical impact (each 24% [n=9]), treatment outcomes/side-effects, impact on work/activities of daily living (each 22% [n=8]), emotional impact (19% [n=7]), and social impact (16% [n=6]).

CONCLUSIONS: With the increasing demand for patient-centric research in decision-making process, SML represents an unexplored opportunity for generating valuable patient insights by exploring untold experiences and outcomes that can complement data collected through traditional methods.