Abstract
BackgroundAn element of health technology assessment constitutes assessing the clinical effectiveness of drugs, generally called relative effectiveness assessment. Little real-world evidence is available directly after market access, therefore randomized controlled trials are used to obtain information for relative effectiveness assessment. However, there is growing interest in using real-world data for relative effectiveness assessment. Social media may provide a source of real-world data.ObjectiveWe assessed the extent to which social media-generated health data has provided insights for relative effectiveness assessment.MethodsAn explorative literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to identify examples in oncology where health data were collected using social media. Scientific and grey literature published between January 2010 and June 2016 was identified by four reviewers, who independently screened studies for eligibility and extracted data. A descriptive qualitative analysis was performed.ResultsOf 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms. Several strengths of social media-generated health data were highlighted in the articles, such as efficient collection of patient experiences and recruiting patients with rare diseases. Conversely, limitations included validation of authenticity and presence of information and selection bias.ConclusionsSocial media may provide a potential source of real-world data for relative effectiveness assessment, particularly on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior. This potential has not yet been fully realized and the degree of usefulness for relative effectiveness assessment should be further explored.
Highlights
Within the context of rising health care costs, limited budgets, and the onslaught of innovative yet expensive medications, the value of health technology assessment (HTA) for decision-makers, regulators, pharmaceutical companies and patients is becoming increasingly important
Of 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms
Social media may provide a potential source of real-world data for relative effectiveness assessment, on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior
Summary
Within the context of rising health care costs, limited budgets, and the onslaught of innovative yet expensive medications, the value of health technology assessment (HTA) for decision-makers, regulators, pharmaceutical companies and patients is becoming increasingly important. A relative effectiveness assessment (REA) conducted directly after-market authorization of a new drug is extrapolated using health outcomes (eg, mortality) obtained from randomized controlled trials (RCTs), which are often considered the gold standard for this type of analysis. Pregnant women, children, elderly people and patients with comorbidities may eventually receive the new drugs examined in RCTs, while these patient populations are generally excluded from such RCTs. researchers may resort to real-world data (RWD) as a supplementary source of evidence to assess relative effectiveness. Real-world data can be defined as “an umbrella term for data regarding the effects of health interventions that are not collected in the context of conventional randomized controlled trials” [1]. Little real-world evidence is available directly after market access, randomized controlled trials are used to obtain information for relative effectiveness assessment. Social media may provide a source of real-world data
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