Most people have little interaction with the health system and tend to be unfamiliar with the prevention, diagnosis, and treatment of even common health conditions. In case of illness, the medical information delivered by health professionals can be overwhelming because of its complexity, unfamiliar terminology, and use of statistical data. Understanding such information requires specific “health literacy” skills. Health literacy empowers individuals to exercise their autonomy and self-determination regarding health-related matters. This chapter explores how health literacy and ethical questions are interrelated as illustrated using actual patient narratives of a woman’s pregnancy experiences. The narratives were collected as part of the Swiss DIPEx (Database of individual patients’ experiences) database. We demonstrate that narratives of health experiences can be used to enhance health literacy. Firstly, narratives can convey complex information in an easily understandable manner. Secondly, they allow policymakers to understand, the informational needs of users of the health care system and the communication gaps they perceive can help improve the health care system and qualitative evaluate and improve medical communication efforts. The chapter ends by raising a number of ethical questions at the individual and health system level related to the use of narratives for improving health literacy for discussion.
In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.
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