For many individuals struggling with depression, the stigma and misunderstanding surrounding the disease can be isolating.
“My mom was sort of ashamed and she told me to keep it a secret,” one young adult said.
By sharing her story, she found relief.
“It’s a lifting of weight,” she said.
The website hopes to help others as well. Earlier this week, the University of Wisconsin-Madison launched the site, the first of its kind in the United States. It aims to provide support for patients and perspective for medical professionals.
“It moves us from that louder, dominant discourse, to a much more nuanced view of what depression is like for people around our country,” said Rachel Grob, director of national initiatives at the Center for Patient Partnerships.
The project, titled “Young Adults’ Experiences of Depression in the US,” was created by the Health Experiences Research Network, a collaboration of researchers from the UW–Madison, Johns Hopkins University, Oregon Health & Science University and Yale University.
The website is a collection of firsthand accounts of 38 young adults with depression, displaying a total of 350 video, text and audio clips. This provides a “textured, rich set of accounts of what it's like to live with depression,” Grob said.
Specifically, the patients discuss how depression feels, living with depression, coming to terms with depression and self-care strategies.
The project is modeled on a program developed at Oxford University, and led to the creation of the website healthtalk.org.
Healthtalk.org was developed by Dr. Ann McPherson and Dr. Andrew Herxheimer, both of whom struggled with illness. When McPherson was diagnosed with breast cancer, she was stunned by the lack of any organized way to learn what it’s like to live with her diagnosis and to find a community of people to support her, said Meg Gaines, director of the Center for Patient Partnerships.
That UK website now covers over 85 modules, with topics ranging from anemia to asthma to autism. Each topic tells the stories of 40 people with the disease, and addresses concerns like how to talk about health with family, the emotional impact of the disease or even the impact on travel. The website serves over 5 million people a year.
There are now 12 countries that have adopted this model, Grob said.
This is the first module for the U.S. site, but the first of many to come. Oregon Health & Science University will soon release a module on veterans who have experienced traumatic brain injury, funded by the Department of Veterans Affairs. Other possible future topics include ovarian cancer, Parkinson's, lower back pain and cystic fibrosis, but funding will be needed for each of these projects.
“This (depression) is the perfect topic to start this, just because of the stigma that can be associated with this illness,” said Nancy Pandhi, assistant professor in the UW's Department of Family Medicine & Community Health.
While it presents young adults’ actual experiences, the project was designed to provide more than anecdotal evidence. Using qualitative research to identify patterns, the project identifies themes and outliers.
“It’s a method for marrying rigorous qualitative research design and methods with a public-facing website,” Grob said.
People working on the project deliberately sought out a diversity of perspectives, and made sure to “elicit the quieter voices, the unheard voices in our social fabric,” Grob said. They interviewed people who were too depressed to leave their apartment, or would never be engaged as a committee member, testify for Congress or speak to a reporter, she said.
“They are never going to be the public face of their experiences, but they were so satisfied … to raise their voice in a way they saw was useful,” Grob said.
At the launch, several young adults who were filmed for the project spoke.
"I feel good that I’m actually reaching out and helping someone else,” one said.
The audience for the website is threefold: the public, medical professionals and medical educators.
For those who struggle with depression, the site can provide information and support.
“It’s a virtual, but not live, support group where they can learn about how other people cope with the sorts of things they’re coping with,” said Gaines.
“It’s completely validated any and all thoughts and feelings I’ve ever had in my entire life,” said one video participant. “I’ve learned a lot about other people and their experiences, but also have gained more respect for myself and how I’ve handled things.”
Another participant appreciated the potential of the project to educate friends and family.
“Maybe if they (individuals with depression) can't express it themselves, they can show this to a family member, maybe a mother or father, and use other people's words to express emotions or thoughts,” he said.
Robert Golden, Dean of the School of Medicine and Public Health at UW, values the patient-to-patient interaction.
“One patient sharing their experience with another is potentially more impactful than a psychiatrist telling a patient what their experience might be like,” said Golden.
Physicians can also use the site to get a sense of the variety of patient experiences and should help them empathize with the experience of living constantly with depression.
Medical educators can use the website to bring much-needed patient perspective into the classroom, something that has been difficult without technology, said Gaines.
“How do you get the patient voice to the classroom and have them not be one-offs?” Gaines said. “You run the risk that that gets translated to future professionals as ‘This is how patients do or should cope with this,’” even though that data might not be representative, she said.
Gaines, who is also a clinical professor of law at UW, believes this website provides the solution.
“For me, I can now bring patients’ voices into the virtual classroom, and actually have real patients speaking for themselves,” she said.