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Validity of social media for assessing treatment patterns in oncology patients: a case study in melanoma.


ABSTRACT: There is a need to understand how patients are managed in the real world to better understand disease burden and unmet need. Traditional approaches to gather these data include the use of electronic medical record (EMR) or claims databases; however, in many cases data access policies prevent rapid insight gathering. Social media may provide a potential source of real-world data to assess treatment patterns, but the limitations and biases of doing so have not yet been evaluated. Here, we assessed whether patient treatment patterns extracted from publicly available patient forums compare to results from more traditional EMR and claims databases. We observed that the 95% confidence intervals of proportions of treatments received at first, second, and third line for advanced/metastatic melanoma generated from unstructured social media data overlapped with 95% confidence intervals from proportions obtained from 1 or more traditional EMR/Claims databases. Social media may offer a valid data option to understand treatment patterns in the real world.

SUBMITTER: McDonald L 

PROVIDER: S-EPMC6994021 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Validity of social media for assessing treatment patterns in oncology patients: a case study in melanoma.

McDonald Laura L   Behl Varun V   Sundar Vijayarakhavan V   Mehmud Faisal F   Malcolm Bill B   Ramagopalan Sreeram S  

JAMIA open 20190903 4


There is a need to understand how patients are managed in the real world to better understand disease burden and unmet need. Traditional approaches to gather these data include the use of electronic medical record (EMR) or claims databases; however, in many cases data access policies prevent rapid insight gathering. Social media may provide a potential source of real-world data to assess treatment patterns, but the limitations and biases of doing so have not yet been evaluated. Here, we assessed  ...[more]

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