On a warm, sunny afternoon, 15 Zuni men and women gather around a table in a nondescript white warehouse on the outskirts of the pueblo as a few people are setting out a healthy buffet lunch that includes homemade chicken lettuce wraps, garlic bread and fresh fruit.
Vallabh (Raj) Shah, PhD, is at the front of the room setting up his computer and projector for the presentation he is about to give. He encourages the visitors to move up – chairs are shifted a tiny bit closer and a couple of latecomers shyly sit at the front.
Shah projects a slide with two dots on opposite ends and asks how to connect them. One woman quietly says, “A line across.” Shah praises her – mentioning that about 85 percent of Americans answer the same way – but “straight shooters” are not what he is looking for. In life, he tells them, thinking outside of the box is better. He asks for other ideas.
Feeling bolder, a young woman pipes up. “A circle,” she says. Shah smiles broadly, causing everyone to giggle. He explains that a circle can represent the four directions of the earth, which means you can bring everyone with you as you connect the dots.
Shah asks for more ideas. A man with a ponytail, a bucket hat and glasses confidently looks up and says, “Combine them together.” This earns the man a fist bump from Shah and laughter from the rest of the audience. “Only 3 percent of Americans are like this,” Shah says “and they are like me. They are crazy people.”
This garners another laugh from the spectators. “So, what do we do?” he asks. “We want to go from A to B, but we are going to go into every direction and try to learn things and bring people along with us then.”
The easygoing exchange is part of the attraction in this group session aimed at teaching diabetic or pre-diabetic patients about their condition and how to improve their health. For the past 20 years, Shah, Regents’ Professor in the Departments of Biochemistry and Molecular Biology and Internal Medicine in the UNM School of Medicine, and his team of community health representatives (CHRs) have held these sessions for patients with diabetes and/or chronic kidney disease (CKD) in Zuni.
Zunis face about a 20-fold chance of developing end-stage renal disease, 4.4 times higher than Americans of European or African descent and 5.6 times higher than other Native Americans. This stems from both genetics and other lifestyle factors that affect the majority of Zuni patients – such as diabetes and high blood pressure – and will eventually cause kidney failure significantly faster than other populations.
Shah’s connection to Zuni began early in 1995, when a Zuni governor admitted to UNM Hospital for kidney failure explained that many of his people had the same diagnosis and were on dialysis. Though Shah had been an experienced geneticist, his mentor of more than 20 years, Philip Zager, MD, saw an opportunity to expand their research into the genetics behind kidney disease in Zuni.
Zager and his team launched the Zuni Kidney Project, a joint venture with Zuni leadership, the UNM Health Sciences Center and the Indian Health Service.
"I still call myself a basic genetics person doing nothing but population-based science,” Shah says. He started out performing genetics studies with the Zuni people to understand the high disease prevalence, but Shah now uses disruptive innovation to prevent it.
Shah reminds his patients of how many resources are now open to cellular phone users with just a push of a button. He thinks of home-based kidney care as a disruptive innovation – like OnStar for health care.
Home-based kidney care includes five distinct features. The first two are the community health representatives themselves – Zuni residents Donica Ghahate and Jeanette Bobelu, who visit a patient at home three times a week every other week – and point of care.
CHRs are trained to provide point of care using portable medical instruments, Shah says. They can take a prick of blood from a patient and deliver all the biochemical test results immediately to the patient. “So, when they started going to their homes,” he says, “each patient felt that they had their own private doctor now.”
The third innovation is patient preference: patients can discuss their treatment with the CHR once they understand their test results. “The idea is to make the patient part of the care team,” Shah explains. This model also allows patients to communicate directly with the CHRs or Shah, day or night, and makes use of motivational text messaging.
Shah’s group sessions represent another cog in the wheel: patient activation. He tells them, “I am informing you, I am engaging you, empowering you, possibly. I'm partnering with you. Because unless if I partner with you, I cannot see any changes in you.”
These interventions have produced impressive results: 90 percent of patients improve their patient activation scores and see significant declines in body mass index and disease markers like glycated hemoglobin A (A1C) levels. Shah points out that improved patient activation has been shown to drastically reduce readmission to the hospital and hopes this will motivate patients to take charge of their health and that of their children.
He tells of a young Zuni girl he met during a screening and outreach session. When he asked whether she wanted a treat or pen and paper, the girl told him she wanted pen and paper. Asked why, she said her mother taught her that if she ate too much sugar she would end up with diabetes like her grandmother.
A woman in her mid-30s with long, elegant hair, agreed with Shah. “For me, since my daughter is still young,” she says, “I can get her to eat healthier foods, be more active and look toward the future, as far as her health and activity levels.”
Most of the participants agree that they have now know how to prevent their disease from getting worse through a healthier diet and exercise. The intervention has also given them a more positive outlook on life.
“Whatever triggers the contributing factors due to diabetes, it’s scary,” says a middle-aged man with cropped hair, a goatee and glasses. “And then to be educated, to learn more – you know, we're grateful that you come to our village."
Shah says CHRs Ghahate and Bobelu get the credit for educating and helping the Zuni patients develop a healthier environment for their community. He derives satisfaction from the small ways in which he can help.
"When I see those 15 people sitting there looking at me that have diabetes or kidney disease, and say, 'I'm going to help them,' that kind of helps me, more than anything else,” he says.
Shah hopes to take his disruptive innovation further by training new CHRs in four other Native American communities around the state in home-based kidney care. "You can take it from there to any other community,” he says.
Just as he advises Zuni patients to be active in their communities’ health, Shah has become an advocate for community engagement with significant societal issues. "You just don't sit around and think about that ‘Oh, our cost is high and I cannot contribute to our society,’” he says, “No, you can. That's my motto.”