Narrating Patienthood: Engaging Diverse Voices on Health, Communication, and the Patient Experience

Abstract

Biomedical researchers are trained to use positivistic approaches to develop efficacious treatments and pursue cures for illness and disease. Accordingly, they rarely engage persons living with the disease in the development of research questions and protocols (Sacristán et al., 2016). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004), they offer value to the research process as a means to emphasize the person with the disease, rather than the disease, in isolation. We are interested in the role of patient stories as tools for influencing the biomedical research process (Greenhalgh, 2009; Panofsky, 2011). Applying Ellingson’s (2009) approach to crystallization in qualitative research, we explore intersections in the literature on patient advocacy, our own narratives, and those from biomedical researchers and patients. We seek to uncover the meaning of involving not only patients, but patients’ stories (Hyden, 1997), in creating an agenda for research in healthcare.