Cleveland Regional StoryBank: A transdisciplinary effort to understand stories of health and disease

We will introduce the Cleveland Regional StoryBank (CRSB), a transdisciplinary effort of scholars in the health sciences, the humanities, the social sciences, and ethics, designed to collect, store, and analyze stories related to health, illness, and disease. Modeled after collections of tissues stored in biobanks to support biological research, this project intends to improve our knowledge of the subjective health and illness experience, and ultimately to improve individual and public health in our region and elsewhere. Whereas biobanks collect, store, and analyze genetic and tissue specimens along with other biomedical information, the CRSB aims to reach deeper into the subjective world so that we can begin to dissect stories and understand the lessons they contain about health. Two individual projects involving genetic risk and intergenerational volunteering have received initial IRB approval, but not yet approval for storage and dissemination in the CRSB. We have begun to illustrate the StoryBank approach by sharing individual stories collected from those experiencing various conditions of severe brain aging commonly called “Alzheimer's disease.” We will share our initial narrative work focused on the challenges of understanding and applying our limited knowledge of genetic susceptibility in so-called AD and the individual and public health impact of an intergenerational public school on the education and quality of life of young students and elders with cognitive challenges.