Please join the Center for Patient Partnerships as we launch our first module on “Young Adults’ Experiences of Depression in the U.S.” on healthexperiencesusa.org. This new web-based resource is the first U.S. project of Health Experiences Research Network (HERN), a collaborative of four U.S. universities that promotes qualitative research on patient experiences with illness and health.
The initial module on the website presents young adults’ experience with depression. Mental health is the leading cause of disability, affecting one in four individuals in the United States. The majority of those suffering from depression go untreated or receive inadequate treatment, often because they fail to recognize or understand the first signs of depression early in life.
The first-person video-archive can be used by patients, families, caregivers, health care professionals, educators, researchers, and policy makers. It makes use of rigorous qualitative research methods to identify patterns in patient experiences and present them in the patients’ own words. This is the first time these methods, initially developed at Oxford University, have been used in the United States.
“It’s an exciting methodology that moves us from the singular patient voice to patients’ voices in the plural,” says Rachel Grob, Director of National Initiatives at the Center for Patient Partnerships. “It moves us away from anecdotal stories. In the research domain, as elsewhere in the patient engagement world, we have a problem with tokenism. We feel like we’ve checked off the box when we have one person’s opinion. We hear the stories of people who have the confidence to interact with researchers, people who are more well educated or whose lives allow them to engage in that way. The powerful solution offered by the DIPEx methodology and the tool we’ve harnessed here is that we can get a much broader range of perspectives.”
This website can also be a valuable resource for practicing clinicians and medical educators. Nancy Pandhi, Assistant Professor of Family Medicine & Community Health says, “I can talk with patients about depression in lots of different ways, but with young adults in particular, to be able to speak their language and understand their experiences really makes a difference. When something like depression is so stigmatizing and scary, patients need to know their doctor understands how they feel so they can trust us to help them find their way.”
“Young Adults’ Experiences of Depression in the U.S.” is a collaboration between members of the Health Experiences Research Network (healthexperiencesusa.org), a partnership of researchers from four major universities, University of Wisconsin – Madison, Johns Hopkins University, Oregon Health & Science University, and Yale University.
The website is designed to expand to incorporate new modules with additional conditions over time. A similar initiative in the United Kingdom (healthtalk.org) now hosts more than 85 modules and received almost two million visits from the U.S. last year. “Americans are realizing that good health and health care depend on how well health systems can understand and respond to patients’ experiences” said Meg Gaines, director of the University of Wisconsin’s Center for Patient Partnerships. “This resource represents an original approach to sharing the diversity of patient encounters with depression from across the country, and represents a unique opportunity to bring patient voices into classrooms where future health professionals are being taught.”
The launch will take place on July 19th at 4:30 PM at the University of Wisconsin-Madison’s Health Sciences Learning Center. Click on the image above or here to RSVP to attend this event in person.
The presentation will be publicly available via live stream. The link to the live stream will appear approximately 10 minutes before it begins under the “Live Events” section. Join us virtually on 7/19 for a live stream of the event.