Objectives
To conduct a scoping review of the literature related to the use of social media listening (SML) methods for understanding patients’ experiences of chronic disease.
Methods
Methodological guidance for conducting scoping reviews was followed. PubMed, Medline and EMBASE databases were searched using terms for social media listening, patient experience and quality of life. Primary research studies and systematic reviews that investigated the use of SML for understanding the patient experience of health or healthcare were included. Titles and abstracts were reviewed by two reviewers. One reviewer extracted data from full text articles. Quality of data extraction was assessed and verified by a second reviewer. A descriptive synthesis was performed with a focus on summarizing information related to the type of social media platforms, methods, data extraction tools and outcomes reported.
Results
The literature search identified 53 studies; 14 met the inclusion criteria and were included in the full-text review and data extraction. Social media platforms included Twitter, Facebook, HealthUnlocked, and disease-specific online communities. methods used by researchers conducting SML included keyword frequency analysis, identification of patient reported terms for functional status, qualitative content analysis, identification of frequently asked questions and modelling of the patient experience. Outcomes included identification of symptoms experienced by and of importance to patients (including physical, psychological and cognitive symptoms), experience of medical treatment and procedures, social relationships and support, financial difficulties, information on the temporal patterns of symptoms experienced by patients and identification of racial and ethnic disparities in patient experience of disease.
Conclusions
The findings highlight the potential value of SML as a method for capturing the patient voice and understanding patient experiences of chronic disease. SML has the potential to complement traditional methods, reduce patient burden and include the experience of people who may not take part in formal research studies.
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