Social Media is not a Health Proxy: Differences Between Social Media and Electronic Health Record Reports of Post-COVID Symptoms

The COVID-19 pandemic transformed many aspects of health and daily life. A subset of people who were infected with the virus have ongoing chronic health issues that range in type of symptom and severity. In this study, we conducted a qualitative assessment of self-reported post-COVID symptoms from patients’ electronic health records (EHR, n=564) and a randomized collection of Reddit and Twitter posts (n=500 for each). We show the inconsistencies in what types of symptoms are shared between platforms in addition to assessing the severity of the symptoms and how social media characterizations of post-COVID do not tell a complete story of this phenomenon. This research contributes to CSCW health literature by connecting digital traces of post-COVID with EHR data, critiquing the use of social media as a health proxy and points to its potential to add context to the analysis of traditional health data extracted from the EHR.