The Zuni Native American tribe has called northwestern New Mexico home since prehistoric times. Today, the 11,000 people who live on the Zuni Pueblo form a young population, with a median age of just 26. Mostly farmers and jewelry-makers, many Pueblo residents grow up speaking Zuni as their first language.
In 1995, a Zuni governor came to the University of New Mexico (UNM) Health Sciences Center, in Albuquerque, for a kidney transplant evaluation. His visit opened the eyes of staff at the essential hospital, who quickly learned that kidney disease is rampant among Zunis. Members of the tribe are 18.5 times more likely than Americans of European or African descent and 5.3 times more likely than other Native Americans to develop end-stage renal disease — a statistic compounded by genetics, lifestyle factors, and comorbid conditions, such as diabetes and high blood pressure.
So, UNM researchers, led by Vallabh “Raj” Shah, PhD, a genetics researcher and Regents’ Professor in the UNM School of Medicine, and his mentor of more than 20 years, Philip Zager, MD, joined Zuni leadership and the Indian Health Service (IHS) to launch the Zuni Kidney Project. This initiative studies the comorbid conditions this population faces, identifies barriers to care, and improves patient outcomes.
From the start, Shah says, it was important to build trust among the Zunis and actively involve them in their care.
“One of my mentors in public health told me that if I really want to work with Native Americans, I have to be at their level and talk to them as much as possible,” Shah says. “Otherwise, they think [we] are like helicopter researchers who come to their towns, pueblos, do something…and go home. We need to have continuous engagement of the community and, also, the tribal leadership.”
Many Zunis don’t take advantage of care provided by the IHS. Through focus groups, Shah and his team learned why: long wait times that can be uncomfortable for a culture that values privacy, anxiety and fear about the diagnosis, and lack of education about conditions and related medication.
“They have taboos about diabetes — if you get it, there is nothing you can do about it,” Shah says.
To overcome those barriers to care, Shah’s team of researchers studied a home-based kidney care model with support from the Patient-Centered Outcomes Research Institute. Half of the 100 study participants participated in the model, while the other half continued to receive care as usual through the IHS.
The model employed five major interventions to make care accessible to Zunis, starting with biweekly home visits by trained community health representatives (CHRs).
“Community health workers and community health representatives are the same, but that label is different. I call them representatives — that means they are from the community, they know the language, they know the people,” Shah says. Many CHRs in training are students from the Zuni community.
While CHRs can help patients navigate many health challenges, they strive to tailor guidance to patient preferences. “Do you want us to talk about salt in your diet, or lifestyle changes, or understanding kidney function?” Shah says. “Patient preference is actually really a unique communication for clinical care.”
CHRs help patients make and sustain such lifestyle changes. Their diabetes prevention curriculum, adapted from Centers for Disease Control and Prevention and IHS guidelines, includes cost-efficient and low-calorie twists on traditional Zuni recipes. It’s not uncommon for a CHR to cook or go for a walk with a patient to teach them these healthy habits.
“Each patient felt like they had their own private doctor,” Shah says.
Helping patients make lifestyle changes isn’t the only way CHRs build trusting relationships. Patients often are skeptical about giving blood samples, but CHRs provide assurance by conducting point-of-care testing with i-STAT handheld blood analyzers, which provide results in real time.
Telehealth services are a vital component of the model. CHRs check in with their patients by sending motivational text messages twice a day for the first four months of the program. They also use the Project ECHO model, developed by UNM, to connect CHRs with clinicians through videoconferencing.
After one year, the group receiving at-home care saw an increased score on the patient activation measure (PAM), a 13-item assessment that evaluates an individual’s knowledge, skill, and confidence for managing their health. The group receiving usual care had a slight decrease in average PAM. Patients in the home-based model also improved risk factors for kidney disease, including body mass index, A1c levels, and high-sensitivity C-reactive proteins (hsCRP).
Shah plans to expand the initiative to four additional New Mexico tribes by 2020 and is conducting focus groups about cancer in the Zuni community. Though his work can be challenging, he is optimistic about improving the outlook for Native Americans in New Mexico.
“It’s not your agenda, but the community’s agenda,” Shah says.