Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology

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.

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study

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“…The IMI-GetReal initiative is a 3-year public-private partnership exploring the use of Real-World Evidence (RWE) in early drug development and drug assessment [ 15 ], including a series of case studies. Here presented is our case study on metastatic melanoma where the potential of social media as a new source of RWE for HTA was investigated within a pilot literature review [ 12 , 16 ]. This research demonstrated the potential value of using social media to inform several parameters of HTA in oncology, including: adverse events [ 12 , 17 – 19 ], treatment adherence [ 18 ] and HRQoL [ 12 , 20 – 22 ].…”

Questions regarding ‘epistemic injustice’ in knowledge-intensive policymaking: Two examples from Dutch health insurance policy

“…Aware of the shortfalls of EBM's strict hierarchy, the Institute now makes use of, for example, GRADE (see Guyatt et al, 2008), an EBM-method that allows more flexibility within the original hierarchy. The Institute is also exploring how to use 'realworld data' (Makady et al, 2017) and patient experiences from social media in health technology assessments (Kalf et al, 2018). This "repair and maintenance work" shows that policymakers continue to search for ways to meaningfully combine patients' and professionals' embodied, qualitative knowledge with aggregate, quantitative knowledge in policymaking.…”

“…Effective ways to include patients' knowledge in public decision-making are still being developed and researched (e.g. Lavis et al, 2009), also by the Institute (Kalf et al, 2018;Makady et al, 2017).…”

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