ROCHESTER, Minn. — The theme of this year’s Mayo Clinic Transform Conference is “closing the gap between patients and health,” something that has been a point of emphasis throughout these sessions.
During an afternoon session on Thursday, Sept. 28, Scott Wallace, associate professor at the University of Texas at Austin’s Dell Medical School, and Elizabeth Teisberg, executive director of the Value Institute for Health and Care at Dell Medical School, outlined how “experience group methodology” can help narrow that gap. The method tries to answer what many physicians and systems strive to learn: What matters most to patients?
“You have to organize health care around segments of patients who share a set of needs,” says Wallace. “That’s different from how health care is organized right now. We organize health care around doctors and how they’re trained, and how we’ve built the infrastructure of health care — outpatient and inpatient and different specialties — even though that’s not how patients experience their medical circumstances.”
Determining those unmet and unspoken needs is what creates value, according to Wallace, which is what care should be organized around.
“When we understand what that [shared need] is, we can create and envision solutions for their medical circumstances,” Wallace says.
That’s where experience groups come in. These are groups of six to eight participants with similar medical circumstances and experiences. Sessions last 60 to 90 minutes and operate under the “Vegas rule,” says Wallace, meaning that what’s discussed in the group stays in the group. Wallace and Teisberg sit by, facilitating discussions if necessary, although groups usually establish a dialogue quickly. Wallace and Teisberg hone in on discussions about how people live and the realities their medical circumstances impose on their lives.
Wallace remembers an instance when a health system’s patients with diabetes weren’t taking their insulin, and one patient consistently stopped taking it after three days. During a session, Wallace asked her why. She looked at him with a puzzled expression, he says, grabbed the insulin directions she was sent home with and pointed to the line that read insulin had to be thrown away after three days if not refrigerated. It turned out that, unknown to the physicians, some of the patients didn’t own refrigerators.
Refrigerators were prescribed to some patients. In a different situation, patients whose medication was frequently stolen were given safes.
But one of the main challenges of creating an effective experience group is making sure patients are correctly grouped together.
Teisberg recalled a breast cancer experience group for women. The women who had undergone breast reconstruction after a mastectomy were not discussing how their appearances had changed, as physicians had asked, but instead how their new breasts felt and moved. This signaled to physicians that they should change their line of questioning and the focus of the discussion. But it also indicated problems with the group's composition.
After the session, patients diagnosed with stage 2 breast cancer said they didn’t want to seem to be complaining to patients who were in later stages of the disease. And those with stage 4 shied away from sharing how their condition was affecting them for fear of scaring those earlier on in the disease's progression.
Teisberg said she believes staff can help patients when they're suffering. "We just need to know that that’s what’s going on,” she said.