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HIV clinic-based audio project emphasizes the power of patient voices
Date:7/23/2014

Memphis, Tenn. (PRWEB) July 23, 2014

The voice on the recording was low and calm as the speaker recounted the telephone call that brought the news he was infected with the human immunodeficiency virus (HIV) that causes AIDS: “My heart just stopped for a little bit and next thing you know I was on the floor flat on my face boohooing, crying like a baby.”

Yet the message was hopeful when the recording ended less than 10 minutes later. “Don’t feel like this is the end of you . . . because it is just God setting you up for something greater,” the anonymous speaker tells an unseen audience.

The St. Jude Children’s Research Hospital VOICES project that captured the patient’s voice and story is the focus of the “A Piece of My Mind” column in the July 22 edition of the Journal of the American Medical Association (JAMA). The project uses contemporary technology to tap an ancient and powerful clinical tool—the patient’s own story—as a way to empower and inspire patients, teach empathy and improve health care.

VOICES began in 2012 as a way for HIV-infected St. Jude patients, ages 18 to 24, to anonymously share the experience of being HIV positive with other patients, health care providers and students. Today, this password-protected archive includes recordings from 18 patients recounting the stories they wanted to tell—the shock of diagnosis, the importance of medication adherence and a healthy lifestyle, the social stigma of HIV or their refusal to let the diagnosis limit their dreams or define who they are.

“This project has confirmed our belief in the power of patient voices and patient stories,” said corresponding author Aditya Gaur, M.D., an associate member of the St. Jude Department of Infectious Diseases. The narratives have empowered participants and have given health care
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