Untangling the web of e-health: Multiple sclerosis patients' perceptions of online health information, information literacy, and the impact on treatment decision making

Abstract

Social media have changed how patients, caregivers and physicians produce, manage and use information when making medical treatment decisions. Because Multiple Sclerosis (MS) patients rely on online information to self-educate about treatment options, it is important to determine whether online decision-making tools are reliable and useful given patients' knowledge of their disease and varying information literacy skills. Therefore, this study investigates the online search practices, perceptions, and usability of web-based information among MS patients. Perceptions of MS patients are measured by a questionnaire administered to a convenience sample of MS patients. Their online search practices are evaluated to determine the kind of information sought and used. Second, online search behaviors and needs are examined for trends related to MS disease type, stage and severity. Third, the relationship between online search behaviors and perceived impact on patient-neurologist communication is examined. Recommendations are offered for improved patient-neurologist communication and the development of inclusive treatment decision-making tools. © 2013 Springer-Verlag Berlin Heidelberg.