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. 2023 Mar;32(3):341-351.
doi: 10.1002/pds.5564. Epub 2022 Nov 11.

Social media for early characterization of pandemic symptoms: A qualitative analysis of patient-reported COVID-19 experiences

Melissa Khashei  1 , Scott Janiczak  2 , Christopher St Clair  3 , Wei Liu  2 , Jae Joon Song  4 , Wei Hua  2 , Monique Falconer  2 , Efe Eworuke  2
Affiliations

Social media for early characterization of pandemic symptoms: A qualitative analysis of patient-reported COVID-19 experiences

Melissa Khashei et al. Pharmacoepidemiol Drug Saf. 2023 Mar.

Abstract

Background: Patients use social media forums to discuss their medical history and healthcare experiences, providing early insight into real-world patient experiences. We analyzed COVID-19 patient experiences from Reddit social media posts.

Methods: We extracted Reddit Application Programming Interface data for the subreddit/COVID-19 positive from March to August 2020 and selected users tagged as "Tested Positive" or "Tested Positive- Me" flair and who posted at least thirty times in any calendar month, excluding users who explicitly stated location outside of the U.S. For tested-positive patients (users), we created and reviewed individual case profiles summarizing their COVID-19 symptoms, testing, and medications or treatments. Data were imported to Nvivo qualitative analysis software and qualitative coding was conducted.

Finding: There were 31 759 posts and comments from 720 users in March to May 2020 (Q1) and 40 446 posts and comments from 1649 users from June to August 2020 (Q2). Final count of "Tested Positive" was 1296 users (280 in Q1 and 1016 in Q2). Across both quarters, frequently reported symptoms included sore throat, headaches, fevers, or chills. Loss of sense of smell or taste were reported by users in early March, prior to the inclusion of this symptom to the CDC list in April and GI-related symptoms and fatigue were reported in the March to May data, before they were added as a COVID-19 associated symptom in July 2020. Users also reported in-depth descriptions of their symptoms, motivations for testing, and long-term impacts such as post-viral fatigue.

Interpretation: Social media data can potentially serve as an early surveillance data source in a pandemic and offer preliminary insights into patient disease experiences.

Keywords: COVID-19; Reddit; patient engagement; qualitative; research; social media.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

FIGURE 1
FIGURE 1
Chronological display of reported COVID‐19 symptoms from selected users and sequence of the CDC's release of COVID‐19 symptoms. The timeline presents COVID‐19 symptoms reported by selected users (dated) with a chronological display of the Centers for Disease Control (CDC) updates to the COVID‐19 symptom list. In red are COVID‐19 symptoms reported by users but not named as a CDC symptom in the time frame the users reported the symptom. *SOB, shortness of breath; GI, gastrointestinal
FIGURE 2
FIGURE 2
Frequency of Reported COVID‐19 Symptoms by Reddit Users in March–May and June–August, 2020 Sore throat included sore throat and other throat‐related symptoms (throat irritation, tickling in the throat). Nasal symptoms included nasal congestion, runny nose, blocked nose. GI symptoms included nausea, vomiting, diarrhea, abdominal pain, gastro‐esophageal reflux disease (GERD)
See this image and copyright information in PMC

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