This story comes to you from Sahan Journal through a partnership with MPR News.
When Mihret Hailegiorgis left Ethiopia with her 19-month-old last fall to visit her sister in Lakeville, she did not know that she had breast cancer. Raising three kids in the midst of a civil war left the 38-year-old little time to think about her health.
But when she noticed an abnormal growth on her chest and showed it to her sister, Mihret agreed to go to the Mayo Clinic and have it checked out. Doctors back home had given her conflicting advice, she said.
Mihret speaks English fluently, but navigating a new medical system, including the American labyrinth of bills and payment, felt too hard, she said. That is, until she was introduced to Brandon Le, a patient navigator at the Mayo Clinic Comprehensive Cancer Center, in Rochester.
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“He was so sweet, so helpful,” she said during a recent conversation with Sahan Journal. “Everything happened within a month, and I wasn’t ready for what to do and how to do it. I have no words to explain how helpful he was.”
“Patient navigation” is individualized assistance designed to help patients, often from disadvantaged populations, overcome barriers in the health care system. The practice is one of the only ways to reduce racial disparities in cancer care, research shows. Patient navigators are also common in other complex specialties, such as transplantation, HIV, and infertility.
The idea of patient navigation dates to 1990, after a trial program at Harlem Hospital Center showed that five-year survival rates for Black women with breast cancer skyrocketed from 39 percent to 70 percent when they had someone guiding them through treatment. Dr. Harold P. Freeman founded an institute to train people to become patient navigators.
Today, some patient navigators have medical backgrounds; others come to the work with post-secondary schooling and experience in communication. (Le, for example, was thrilled to stumble upon patient navigation as a career after graduating from the University of Wisconsin–La Crosse with a degree in health science.) Patient navigators typically have extensive knowledge of their target community, and are often members of those communities; the race of a patient and patient navigator is very often the same.
Recently, the American Cancer Society reiterated the need for patient navigators. The organization published 13 articles in conjunction with the journal Cancer highlighting recent research on how patient navigation improves outcomes for cancer patients—especially those from marginalized communities.
Data show that patient navigation decreases hospitalizations and intensive-care-unit admissions, increases cancer screenings, and speeds up treatment initiation and follow-up care. Qualitative research shows that people who use patient navigators are more likely to receive emotional support and care that is appropriate to their cultural background.
“We want to put the patient in the center of the conversation,” said Rahel Ghebre, a professor at the University of Minnesota Medical School and associate director for diversity, equity, and inclusion for the Masonic Cancer Center. “Historically, we put the science and the system first and worked backward to get the patient plugged in. Now we understand the question, and the answer is all about the patient. That’s where patient navigation really comes into play. It bridges that space between the patient and the system.”
No one tracks the overall number of patient navigators in the state or country, but there are signs that the practice is spreading. For example, a 2022 study published in the Journal of the American Board of Family Medicine showed that Hispanic patients who had a patient navigator were three times more likely to have access to primary care than patients who did not.
The Mayo Clinic currently deploys eight patient navigators across its system, and is looking to expand the program. The American College of Surgeons requires cancer programs to offer patient navigation in order to earn its Commission on Cancer (CoC) accreditation, a designation many patients seek out because of its association with quality care. Approximately 71 percent of all newly diagnosed cancer patients in the U.S. or Puerto Rico receive treatment in one of the more than 1,400 CoC-accredited facilities, according to Sharon Gentry, program director for The Academy of Oncology Nurse & Patient Navigators. Other independent organizations also offer patient navigation services.
But with almost 2 million new cancer cases diagnosed yearly in the U.S., that leaves hundreds of thousands of cancer patients who do not have the option of using a patient navigator.
“They work, but they cost money,” Ghebre said. The patient-navigation program at the Masonic Cancer Center ended when its funding ran out from a National Institutes for Health program, she said. She’s now working on a funding plan to bring navigators back. A 2019 study, published in the Journal of Oncology Practice, found that ultimately, patient navigators can reduce costs.
So how, exactly, do patient navigators help? We talked to a team of navigators at the Mayo Clinic and some of their patients to find out.
When you don’t speak ‘cancer’
Most new cancer patients can feel overwhelmed when facing a roomful of doctors in white coats speaking a language of pathways, BRCA1 and BRCA2 genes, immunotherapy, and stages and grades. For people new to Western medicine, the experience can be incomprehensible.
“For a lot of patients, this is their first time having contact with such a large health care system,” said Schyler Martin, a patient navigator serving Native Americans and Alaska Natives at the Mayo Clinic Cancer Center. Most clinics serving reservations have a staff of just one or two doctors, he said. “So it’s hard to grasp the idea of the ‘care team.’ I’ve had many patients comment to me, ‘I’ve spoken to so many doctors and nurses and they’re all part of my team?!’”
Occasionally, a provider will call a navigator into the exam room. Once, Martin recalled, a new patient at Mayo had stopped engaging with the provider, appearing to shut down.
“Once I was introduced, the patient’s eyes lit up and we had a 10-minute conversation,” Martin said. The patient turned so chatty that eventually, the doctor had to interrupt.
On the flip side, navigators can also help educate providers on cultural competencies, Martin said—often simply by dispelling myths and stereotypes. Martin, an enrolled member of the Munsee Band of Mohicans, was working at Mayo as a clinical assistant when he saw a posting for a patient navigator serving Native American populations. Since getting the job, he has helped physicians learn more about different Native American communities. Martin recalled explaining to at least one physician that not all Native Americans have gotten rich from casinos, he said.
Laura Kurland became a patient navigator after experiencing what it’s like for a family to go through cancer treatment without any help. She recently helped a Spanish-speaking patient from Austin through months of treatment at the Mayo Clinic.
After 48-year-old Elaine Carbollosa was diagnosed with a rare form of skin cancer in September, things happened very fast, she said through an interpreter.
“September 14, I received the diagnosis, and from that moment on, we started treatment,” Carbollosa said. Her official diagnosis was Dermatofibrosarcoma protuberans (DFSP), a cancer that causes lumps of tissue to grow near the skin.
Because the cancer is rare, the treatment protocol wasn’t completely clear at the start. She learned that she might be offered treatments through a clinic trial–though she’d have to make a rapid decision about whether to participate.
“I wanted to make sure that she felt comfortable knowing all the details,” Kurland said. “There were concerns about costs and the number of visits.”
Cancer care often involves clinical trials, said Angela Young, patient navigator supervisor at the Mayo Clinic Cancer Center. A clinical trial is a type of research that evaluates the effectiveness of new tests, medicines, or treatments, offered to patients who choose to participate.* Clinical trials are prevalent in cancer care, but they introduce another layer of complexity.
“Clinical trials can be a significant part of the journey, and we don’t want [patients] to feel like they’re being offered something because they’re dying or a guinea pig; we want to normalize it,” Young said. “Sometimes when people hear ‘clinical trial’ they shut down, so we lay the groundwork early.”
Often, Young said, patients with the greatest needs come from underserved and Black and brown populations that may have a mistrust of the medical system.
Patient navigators have been shown to increase the chances that people will enroll in studies. That’s important for individual patients, Ghebre said, and for the general population. Researchers believe that cancer treatments may be more or less effective within certain genetic populations. Yet white patients are often overrepresented in clinical research studies.
Conversation about clinical trials that happen in a non-threatening space instead of an exam room or doctor’s office can bridge trust, Ghebre said. When patient navigators are speaking in a language that a patient can understand, people feel free to ask questions. Many want to know why they might get a placebo instead of a drug, for example, or why people in the same trial receive different treatments.
Without Kurland, Carbollosa said, “for me it would have been a disaster. I didn’t know who to go to or where to ask things. Laura is the one who tells me where to go and just shows me the way.”
Confronting cancer, and a pile of medical bills and insurance claims
Brandon Le helped Mihret navigate an application process for a Minnesota program that helps cover pre-diagnosis screening costs for low-income women who have breast or cervical cancer. He also facilitated her enrollment in government assistance, which covered the costs of her surgery. That meant not only giving Mihret the information, but following up with her to make sure she was on track.
“He called me and asked if I had called,” she said, referring to the Emergency Medical Assistance number she hadn’t yet managed to dial. “I thought, oh, there is a person caring this much! And every time I called him, he answered the phone. It was really marvelous, and I’m so thankful.”
At the Mayo Clinic, finding and paying for lodging is often another barrier. Patients often come to Rochester from hours away and face the prospect of weekly or daily appointments. Navigators know which hotels provide heavy discounts to patients, and can even book lodging for them. Once, when a patient needed a place to receive in-home hospice care, Le was able to negotiate new terms with a local rental house, allowing the patient to die in a home setting instead of a hospital.
In addition, patient navigators often apply for grants for patients from nonprofits. The Lazarex Foundation, for example, helps low-income patients with out-of-pocket costs to participate in clinical trials. Patient navigators keep a database of such grants, many of which help defer the costs of traveling or lodging for clinical trials—and many of which patients may not know about on their own.
Cancer can be lonely
Mihret knew she needed assistance with figuring out the finances of her care, but she didn’t realize how much she would appreciate other forms of help. She and other patients grew teary talking about how their navigators helped them through their care.
“It was a big support, and not only financial,” she said. “It’s really emotional support.”
Le encouraged Mihret to leave her practical and financial worries to the Mayo Clinic, and focus on herself. She remembers Le and others at Mayo repeatedly saying, “We’ll find a way to handle your other issues,” she said.
It was exactly what she needed to hear, she said.
For Carbollosa, “Laura was like an angel. I never knew this kind of help could be possible,” she said, adding that the experience made her realize she wasn’t alone. “I think God is up there and put the right person in the right place at the right moment.”
The emotional support may be why patients with patient navigators are more likely to follow through with treatment. A patient of Martin’s was losing hope when she found out her breast cancer had metastasized to her brain. Providers explained that they could try a treatment that wouldn’t produce clear results for several months.
“The patient was having a very hard time with that, so I met with them,” Martin said. “I said, we don’t know, and it’s hard not knowing. But it’s not a negative thing yet. We’re in a gray area.” He gave her a stone that had been harvested from Bolivia, suggesting that she hold it while she stepped outside to say prayers and “practice the old ways as strength.”
A few weeks later, the patient had a terrible day involving an argument with her caregiver and decided to quit treatment. But when she checked her mail, she found a letter saying she’d been accepted for a grant that Martin had applied for on her behalf. She took it as a sign from the Creator that she needed to continue with treatment.
Three months later, she called Martin: Her scan was clear.