Studying Rare Patients with Commonly-Available Information: Social Mediomics for Researching Patient Histories in Autoimmune Hepatitis (AIH)

Abstract

Autoimmune Hepatitis (AIH), an incurable chronic condition of unknown cause where the body attacks its own liver, is a rare disease, with a current diagnosed worldwide prevalence of < 150,000. Inadequately treated, AIH can cause progressive liver damage and ultimately liver failure. A wide variety of symptoms are associated with AIH including severe fatigue, joint pain, depression, anxiety, and insomnia. While precision medicine’s genomics has attempted to shed light on the disease, other non-molecular “-omics” approaches can be taken in studying AIH patients, who often utilize social media to gather information from other patients or care providers to apply to their own AIH disease course. It is proposed that these patient-generated social mediomes can create self-report health records for patients – and facets of their lives - otherwise unreachable by conventional research. In this feasibility study, I examined in an exploratory fashion the social mediome of a large (N > 1000) gathering of AIH patients and caregivers as present on a Facebook Group to determine the potential of mining various types health-related user information. The following types of information were mined, with feasible indicating a reliability of F >= 0.670:

Types of health information shared and structures of information sharing (Feasible) Types and directionality of support provided by and to users (Portions feasible) Clinical factors (AIH-related and otherwise) disclosed by users a. Medication intake (Feasible) b. Signs and symptoms (including pain and injury) and diagnosed comorbidities (Portions feasible) c. Results of disease monitoring blood tests (Portions feasible) Contextual (non-clinical; environmental; social) factors disclosed by users (Detection of which type of factor discussed occasionally feasible). The resulting knowledge is required to adequately describe the disease not only clinically, but also environmentally and socially, and will form part of the basis for future disease studies.