“I don’t want this to happen to anyone else, so I got involved,” says Rosie Bartel.
Bartel describes herself as a wife, mother, grandmother, and educator. She’s also a patient advisor to health researchers and scholars, drawing on her own devastating healthcare experiences.
“In August of 2009 I underwent a total right knee replacement that developed into a MRSA staph infection,” she says. “This healthcare-acquired infection has led to 58 surgeries, over 200 hospitalizations, more than 100 blood transfusions, 10 incidents of septic shock, a right leg amputation six inches above the knee, and finally a total hip amputation with the removal of some of my pelvic bone.”
Bartel first served as a patient advisor 12 years ago, when the Wisconsin Department of Health Services and Wisconsin Hospital Association organized a statewide committee on healthcare-associated infections.
“It was very new for the Department of Health, to bring a patient in,” says Bartel. “But they felt that it was important to have that patient voice at the table with lived experience.”
While serving on that committee, Bartel met Nasia Safdar, MD, PhD, University of Wisconsin–Madison School of Medicine and Public Health Professor and Associate Dean. Safdar’s research focuses on interventions to prevent and reduce healthcare-associated infections.
“I kept saying to my husband, I need to get to know her,” remembers Bartel. “The answers are going to have to come through research. We can figure out how to create better hospitals and healthcare to prevent MRSA.”
Bartel didn’t just get to know Safdar. She also worked with Safdar and colleagues to develop an advisory group of patients and family caregivers who had dealt with healthcare-associated infections.
Bringing together researchers, clinicians, and patients can improve care. Bartel points to sepsis as one example.
Over an average year in the United States, 1.7 million adults develop sepsis, according to the CDC. Among hospital patients, at least 350,000 people either die from sepsis in the hospital or are discharged to hospice.
“We started talking about what it was like to be a patient with sepsis,” says Bartel. “I would go to every sepsis presentation at conferences and hope that there would be patients. I wanted to talk to people who had survived sepsis.”
“All the patient stories start with the fuzzy brain and not being able to communicate correctly,” says Bartel. “Not everybody runs a temperature with sepsis. We used to think temperature was the first thing to look for, but I never ran a temperature until I was in septic shock.”
“It was because of patients and their stories that today there is a better way of looking at sepsis,” she adds. “More people are surviving sepsis.”
It can take time for researchers to figure out how to work with patient advisors.
With one group, it took a year and team building exercises for researchers and patients to develop a partnership.
“I’ll never forget, because we literally went out and checked wheelchairs,” says Bartel.
“The patients were concerned that we just keep putting people in and out of wheelchairs. And even though there might be a cleaning process, they aren’t cleaned regularly. So, one of the researchers went out to check. They found that 95 percent of the wheelchairs hadn’t been cleaned. That showed that the information we were bringing as patients was truthful.”
When she first joined another group of researchers, “I would say something” during a virtual meeting, and “they would type about something else in the chat,” says Bartel. “It was annoying, but I’m not going to go away, even if you ignore me. I’m going to keep bringing things up. Eventually, they saw the value of having the patient’s voice.”
“Patient stories are data,” stresses Bartel. Patients can also provide fresh and independent perspectives.
“I do ask tough questions,” she says. “What do I have to lose, other than to make care better for other patients?”
–Diane Farsetta