Digital Long Covid Communities—Shaping Diagnoses, Treatment Strategies and Modes of Expertise

Abstract

Introduction

Despite having been created on social media, research into the effects of online engagement on long Covid (LC) as a diagnosis is scarce. Studies on other health-related communities and patient participation argue that social media and other digital technologies have been instrumental in creating new ways for activism, advocacy and sharing of experiences. With its status as patient-made, LC constitutes an example of how diagnoses are (re)constructed through social interactions in addition to Western biomedical science and clinical practice. The aim of the study is to investigate the ways in which lived experiences and larger narratives of LC are communicated and form understandings of the condition as a heterogeneous diagnosis/phenomenon.

Methods

This study uses netnography, mainly focused on hidden observations of patient support and advocacy forums in which users' posts are individually sourced and thematically analysed. These themes are further discussed to illustrate overarching discourse that contributes to the sense-making and creation of knowledge surrounding LC.

Results

The study highlights three major themes, namely: users seeking commonalities in experienced symptoms, interpatient tinkering as a form of biohacking conceptualised as an epistemological process, and negotiating expertise.

Discussion

The study finds that narratives shared in online spaces regarding LC act as critical factors that serve not just the affected individuals' sense-making and understanding of their lived experience, but also in the construction of the diagnosis itself. Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis. Building on the sociology of diagnosis, I argue that LC serves as a significant example of how diagnoses are products of the entanglement between biomedicine, clinical practice, the social and the digital.

Patient or Public Contribution

The project operates under the premise that patients from different social, cultural and professional backgrounds participate in online discussions about long Covid and that these individuals work towards individual as well as collective well-being. As such, highlighting their engagement has the potential to inform and strengthen research and clinical practice in various ways.