One man said his depression started when he entered foster care. Another said caring for his dog alleviated thoughts of suicide. A woman said she continues to struggle with depression despite getting treatment.
The stories appear on a new website, developed in part by UW-Madison, designed to help patients and doctors around the country learn about the range of patient experiences with various diseases.
The project, found online at healthexperiencesusa.org, debuts Tuesday with insight from 40 young adults with depression, based on interviews by UW-Madison researchers.
UW-Madison is working with Johns Hopkins University, Oregon Health and Science University and Yale University on the effort through the Health Experiences Research Network, formed two years ago.
Upcoming topics could include veterans with traumatic brain injuries, chronic lower back pain and parents who have children with cancer.
Input from patients appears on the website in video, audio or text, organized by topics such as “depression and school” and “depression and pets.”
The idea is based on work at Oxford University in England, where feedback from patients with more than 85 medical conditions has been compiled.
“It creates a resource for patients to hear each others’ voices without having to go to a support group,” said Meg Gaines, director of UW-Madison’s Center for Patient Partnerships, a key organization involved.
Doctors “can learn what it’s like to be them, to live with their disease,” Gaines said.
The tool could also help medical students hear a greater variety of perspectives from patients than having one or two of them speak to a class, she said.
Diversity among the patients is a priority, not only regarding ethnicity, gender and sexuality, but also educational level, rural-urban-suburban background and personality, said Rachel Grob, director of national initiatives at the Center for Patient Partnerships.
“We want to elicit voices of people who will tell their story but never be a committee,” Grob said. “We really need to hear the diversity of experiences people are having from diverse patients.”
Meghan Vieth, 19, a student at UW-Madison, is among those who were interviewed about depression. She told the Wisconsin State Journal she started battling depression while in middle school in Darlington, near where she grew up.
Depression “isn’t discussed” in rural areas, Vieth said.
“I didn’t hear anything about mental illness until I was a senior in high school ... I had no one to talk to,” she said.
After moving to Madison, she started taking an anti-depression medication. “I have just really transformed, and I just feel like a whole other person,” she says on healthexperiencesusa.org.
Dr. Nancy Pandhi, a family medicine doctor at Access Community Health Centers and an assistant professor of family medicine at UW-Madison who is working on the project, said depression is a good disease to start with because it affects many people and is easily misunderstood.
“People still hear that it’s in your head or it’s something you should snap out of,” Pandhi said. “There’s a lot of fear of being perceived as weak.”
The interviews led Pandhi to alter the language she uses when talking with patients with depression, she said.
For example, instead of asking who their supports are, she asks how they decide whether to tell others about their condition. Many patients interviewed identified that is a key concern, she said.
“It has made it more real and less clinical,” Pandhi said.
The 40 interviews, in people with depression ages 18 to 29, were conducted in Madison, Milwaukee, the Chicago area, Connecticut, New York and Oregon. Organizers hope to incorporate the South in the future for more of a national representation, Grob said.
The depression project was supported by the UW School of Medicine and Public Health, the Wisconsin Partnership Program, the UW Medical Foundation, the UW Institute for Clinical and Translational Research, the UW Department of Family Medicine and Community Health, the Health Innovation Program and the Center for Patient Partnerships.