Biomedical researchers are trained to use positivistic approaches to develop efficacious treatments and pursue cures for illness and disease. Accordingly, they may rarely engage persons living with the disease in the development of research questions and protocols (Sacristán et al., 2015). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004), they offer value to the research process to emphasize the person with the disease, rather than…
Read moreBiomedical researchers are trained to use positivistic approaches to develop efficacious treatments and pursue cures for illness and disease. Accordingly, they may rarely engage persons living with the disease in the development of research questions and protocols (Sacristán et al., 2015). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004), they offer value to the research process to emphasize the person with the disease, rather than the disease, in isolation. In this chapter, 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, we explore intersections in the literature on patient advocacy, our own narratives, and those from biomedical researchers and patients. We seek to uncover the value and implications of involving not only patients but also patients’ stories (Hyden, 1997) in creating an agenda for research in healthcare.
