June 07, 2006

"Big humanities" project uncovers stories of illness

New StoryBank to aid researchers and doctors in understanding disease


Stories can be powerful.

Case Western Reserve University researchers will begin gathering medical stories told by people from Greater Cleveland area about their illnesses and medical care. Their accounts will provide a deeper look at what health means for individuals and the region.

A grant from the Greenwall Foundation will support the creation of the digitized, multimedia Cleveland Regional StoryBank. It is a trans-disciplinary project of Case's College of Arts and Sciences, the School of Medicine and the Weatherhead School of Management.

The project—which crosses the fields of anthropology, bioethics, cognitive science, English, genetics, history, languages, medicine, philosophy, religion and sociology—will be unveiled during the New Media Consortium meeting in Cleveland on June 8 at the Intercontinental Hotel.

"The idea behind StoryBank is that stories can literally create and certainly strongly influence health and disease in both individuals and communities," said Peter Whitehouse, a neurologist from the Case School of Medicine and a principal investigator on the project.

In addition to Whitehouse, the project is led by Jonathan Sadowsky (history) and Sara Waller (philosophy) in the College of Arts and Sciences. The program integrates areas of society and health in the Medical Humanities.

Initially the project will focus on people with Alzheimer's disease, autism and depression—areas of concentrated research at Case. Other illnesses will be added as the project evolves.

This will be one of the first times that a university and region will collaborate to find out how people locally think about being sick.

Culture, where people live and religion can influence health, said Whitehouse.

"Stories of illness provide the counterweight to biological data that can erase the personal experience," report the project leaders. "So-called "personalized medicine" based on a map of an individual's genes to predict disease actually could become depersonalizing if people are treated as the sum of their genes." Says Whitehouse

Whitehouse said StoryBank has the potential to influence public health as similar stories among the sick begin to emerge.

"The end goal is to have a positive outcome for the health of the region," said Associate Professor Sadowsky, who is the Theodore J. Castele Professor of Medical History.

Sadowsky added, "It also has big gains for the social history of medicine—an area of research that is increasingly paying attention to the patient's perspective."

Each patient will respond to a list of standardized questions, asked by graduate student researchers and undergraduates working on senior capstone research projects. Digital technologies like recorders, videotapes and photographs capture the experience.

According to Whitehouse, the StoryBank will be ongoing and could be limitless with the computerized repository stored at the Case's Dittrick Medical History Center, one of the country's leading medical museums.

Like patient information gathered by doctors, the individual stories will be protected for privacy and follow the established guidelines set for ethical research.

Access to the information will be given to appropriate researchers.

StoryBank will complement BioBank or the collection of biological data from tissues, blood, tumors and other physical material that people with particular diseases give doctors for research in understanding and finding cures for diseases, said Whitehouse.

Coupling the biological information with the personal experience, Whitehouse said the project gives a "gene and meme" approach to understanding disease, with the gene the genetic component and the meme, a piece of memory.

"The power of stories to improve health will complement the power of genes, and a true personalized medicine sensitive to cultural variations can emerge," said Waller, assistant professor of philosophy.

Whitehouse also see the project as putting the region on the map with what has been described by Mark Turner, dean of the College of Arts and Sciences, as the "Big Humanities" project.

He further likens the project to the "Big Biology" project that decoded human genes and the "Big Physics" project that built the super-colliders to discover new subatomic particles.

Other Case researchers involved in StoryBank are Per Aage Brandt (modern languages and literatures), William Deal (religion), James Edmonson (Dittrick Medical History Center), Kimberly Emmons (English), Jennifer Fishman (bioethics and ?sociology religion), Atwood Gaines (anthropology), Susan Hinze (sociology), Eric Juengst (bioethics) and Todd Oakley (English).

As the project grows, the project leaders envision Case's other professional schools, such as dental medicine, law, nursing and social work, contributing to the project's story database.

For more information: Susan Griffith 216-368-1004.

Posted by: Heidi Cool, June 7, 2006 12:25 PM | News Topics: College of Arts and Sciences, Healthcare, School of Medicine, Weatherhead School of Management

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