The University of Wisconsin-Madison in collaboration with other universities is starting a web page to feature patient health experiences with different diseases, healthexperiencesusa.org. The first module they featured was about young people with depression. They will start to add more diseases and medical procedures, module by module.
Dr. Nancy Pandhi, a physician and assistant professor at the UW School of Medicine and Public Health, was co-principal investigator for the project involving depression in young people with her colleague Rachel Grob. We talked to Dr. Pandhi about the launch of the website and her hopes and expectations for the future.
She said that so far, the website has gotten a great response. She has been hearing from different audiences, including patients, families and researchers who all have given positive feedback. They have said it’s a great way to understand the patient experience.
“I think we expect it to be something that’s going to reach multiple audiences,” she said. “I can envision a future we anticipate there’s just going to be lots of users.”
The UK website that this one is modeled after had nearly 2 million visits from the United States last year. Dr. Pandhi expects the same kind of results with this website based in the U.S. Not only are people going to hear about medications and treatments, which can be found elsewhere on the Internet, people will hear from actual patients about what it’s like to live with a disease.
There are many advantages to this kind of research, Dr. Pandhi said. First, as the project is completed, they get to put the information out there on the Internet. It’s also easy to get information out via social media. They also have the option between visual text and audio and video recordings. If people would rather sit back and listen, they have that option. “It’s also a lot easier because the clips aren’t very long you can zero into the clips relevant to you,” she said. “By using clips, it gives a different perspective.”
However, some visitors may not understand the rigor that goes into creating this kind of website, she said. Some may skip to the patient stories without understanding the methods behind the project. “Unless people go through it from the front page that tells you about the methods, and understand it, there may be that risk.”
She also said that they need to do more research into how people are actually getting to the website. Without using Analytics, it is hard to have a sense of that. Whether it’s a Google search, social media, or a link from another website, this all needs to be measured.
“We have a really lofty goal. We talked about changing the healthcare system,” she said. “We hope that a source like this website will demonstrate patient experiences more broadly.”
Dr. Pandhi hopes that this will be a useful tool for many people. “We hope that when people are looking for what it’s like to experience an illness they find this information helpful,” she said.
She also explained why this kind of website is different than the typical information that comes from a doctor. “As doctors, we often care about our patients, but you are not the one that has to live with an illness day in and day out,” she said. “We haven’t gone through it ourselves. It’s a different place than somebody who lives with an illness.” As a doctor, she can provide this resource to her patients.
The next module will use similar methods and focus on traumatic brain injury in veterans, led by Erika Cottrell from Oregon Health & Science University.