Patients with chronic illnesses develop considerable knowledge about their conditions and the management of their symptoms over time. Such knowledge is sometimes referred to as patient expertise, defined as all the knowledge acquired over the years through patients’ lived experiences, their interactions with the healthcare system, and their relationship with medical professionals (Sanderson, Angouri 2013, Flora 2015, Tomasky 2023). From a lexical perspective, this expertise is revealed through patients’ appropriation of the terminology typically used by medical experts, be it specific to one illness or to the medical field in general (Fage-Butler, Niesbeth Jensen 2016, Bellander, Landqvist 2020, Delavigne 2021).
Drawing on an experiment reported in Drouin et al. (2018), in the domain of the environment, we seek to identify a shared layer of lexicon among patients with different chronic illnesses that would be typical of patient expertise. To do so, different term and keyword extraction methods (Scott 1997, Drouin 2003, Egbert, Biber 2019) are applied to a 3.2-million-word comparable corpus of texts from French medical experts and patient forums on chronic illnesses (e.g., endometriosis, type 2 diabetes). The results are combined to uncover the units that are specific to both patients’ online discourses and the medical field. This approach highlights three main categories of units: 1) health-related terms (e.g., body parts, symptoms, providers), 2) expression/request of support, and 3) daily chronic illness management. Building on these findings, a contextual analysis of these units is performed in the forum subcorpus, which provide further insight into their use by patients and their differences from medical discourse.
These observations help better depict patient expertise from a lexical perspective, thus refining our understanding of how patients appropriate terms and concepts related to chronic illnesses. This supports the enhancement of patient-provider communication and the creation of better-tailored resources for patients.
