Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients With Gastrointestinal Stromal Tumor: Survey Study.
Anne DirksonDide den HollanderSuzan VerberneIngrid M E DesarOlga HussonWinette T A van der GraafAstrid W OostenAnna K L ReynersNeeltje SteeghsWouter van LoonGerard van OortmerssenAndré B P van KuilenburgWessel KraaijPublished in: JMIR formative research (2022)
Forum users showed no particular bias on the most important demographic variables of age, sex, socioeconomic status, and time since diagnosis. This may reflect the narrowing digital divide. Overrepresentation and underrepresentation of patients with GIST in different treatment phases on social media should be taken into account when sourcing patient forums for patient-generated health data. A further investigation of the sample bias in other web-based patient populations is warranted.