CPP’s Rachel Grob and colleague Nancy Pandhi of the UW Department of Family Medicine and Community Health (DFMCH) are heading a team of U.S. researchers who have been invited to join the prestigious international patient experience organization, DIPEx International (DI).
DI is a global collaborative that promotes qualitative research on people’s personal experiences with illness and health—for the benefit of patients, caregivers, health care professionals, educators and policy makers. DI members use a well-established methodology for videotaped patient experience interviews that was pioneered at Oxford University.
“It’s a wonderful way to move from patient voice in the singular to patients’ voices in the plural, which is a critical evolution of our ideas and our movement away from a more tokenistic and less developed approach,” Grob said. “Each patient has a very particular and sacred set of experiences; to educate health professionals to work with a very wide and diverse population, they really need that plurality of voices to understand what the constants are, and more importantly, what the differences are and what the diversity is.”
Once established, each country’s team launches its own version of the award-winning patient experiences website healthtalkonline.org, where video clips illustrate—in patients’ own words and with their own voices—aspects of experience determined by the research as thematic or representative.
According to international survey data, patients who visit the DI website feel better informed and less isolated. Medical school educators rely on the content extensively to help future health care providers understand what illness feels like from patients’ perspectives. Similarly, policy makers get a more representative view of patients’ experiences. There are almost 4 million visits to the Oxford website per year from the U.S., so we know there is a need for this information!
The U.S. is the tenth country to join the collaborative, and has been offered the status of Founding Member. Grob is the qualitative research lead for the U.S., and will represent the University of Wisconsin and the U.S. team (which includes Johns Hopkins University, Oregon Health and Sciences University, and Yale University) on the Board of Directors for DI. Grob and Pandhi are hard at work producing the first “module” for the new healthexperiencesUSA.org, which will focus on young adults’ experiences with depression.
Patient experience has received increasing attention in the health care system, but research in this arena remains challenging because narratives are, by definition, difficult to quantify. “It is imperative to move from case-by-case stories to rigorously collecting the full diversity of patients’ experiences and representing them responsibly,” Grob commented. “With the DIPEx methodology, we are poised to make this shift.”