Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults (Preprint)

Abstract

Research examining online health communities suggests that individuals affected by chronic health conditions can obtain valuable information and social support through participation in peer-to-peer web-based information exchanges, including information sharing and seeking behaviors. The risks and rewards of these same behaviors in the case of acute illnesses, such as COVID-19, are less well understood, though there is reason to believe that individuals with COVID-19 and other acute illnesses may accrue similar benefits.

This study examines the propensity of American adults to disclose and discuss their COVID-19 diagnosis and symptoms on social media while actively infected with the SARS-CoV-2 virus, as well as to engage in peer-to-peer information seeking in order to better understand the illness that they are experiencing. Additionally, this study seeks to identify the motivations for these behaviors as well as their subsequent impacts on perceived social connectedness and health anxiety in patients with COVID-19.

We conducted a representative survey of 2500 US-based adults using a sample purchased through an industry-leading market research provider. Participants were selected through a stratified quota sampling approach to ensure a representative sample of the US population. Balanced quotas were determined (by region of the country) for gender, age, race, ethnicity, and political affiliation. Responses were analyzed from 946 participants who reported having an active social media account and testing positive for COVID-19 at least once since the start of the pandemic.

The results show that only a small portion of social media users (166/946, 18%) chose to disclose and discuss their COVID-19 diagnosis while infected with the virus. However, among those who did, an overwhelming majority (206/251, 82%) said that doing so helped them feel more connected and supported while infected with the virus. A larger percentage of the 946 respondents (n=319, 34%) engaged in peer-to-peer information seeking while infected with COVID-19. Among those who did, a large majority (301/319, 94%) said that doing so was “helpful,” but more than one-third (115/319, 36%) said that reading about other people’s experiences made them “more worried” about having COVID-19, while 33% (108/319) said that it made them “less worried.” Illness severity and political affiliation were significant predictors of both information sharing and seeking.

The findings suggest that the benefits (and risks) associated with online health communities are germane to patients with acute illnesses such as COVID-19. It is recommended that public health officials and health care providers take a proactive approach to cultivating professionally moderated forums supporting peer-to-peer engagement during future outbreaks of COVID-19 and other acute illnesses in order to improve patient outcomes and promote social support and connectedness among infected patients.