Dennis Zane Kuo
Through clinical research, teaching and his own hands-on care of children with complex special needs, Dr. Dennis Kuo works to replace a fragmented health system with planned medical neighborhoods in which caregivers work together for the good of all.
T ime to go. Past time to go. Not rushing but not stopping, Dr. Dennis Kuo slings a ginormous backpack across his slender shoulders as easily as an afterthought. He’s got his Diet Coke, and he’s off, across the Arkansas Children’s Hospital campus, light glinting on his wire-frame glasses, his focus on his next entrusted task.
But when he’s with you, he’s right there, even when text messages start ringing into his pocket like a pileup of clowns on bicycles.
And not just listening well, but talking 90 to nothing. He confides he has been a little calculating in deciding which of his “generic pediatric” ties, the cats and giraffes or Speed Racer, might photograph better. He jokes about spending his life at Shuffles dance studio, where his wife and daughters take ballet and tap, and how he likes the goofy back stories of characters in The Nutcracker.
Before you can ask how to say his name, he volunteers it rhymes with one of his seventh-grade vocabulary words, “status quo.”
If your name was Zane, he says, you would get a high-five, because people named Zane are “awesome.”
And he admits that, just before Pulaski Heights United Methodist Church’s service of Lessons & Carols went on the air at 9 a.m. Dec. 13, while he sat at the piano before the children’s choir, he played two bars from A Charlie Brown Christmas. “The Linus and Lucy, the famous part. All the kids are just lined up there and they’re like, ‘Why are you playing Charlie Brown? Play more!’
“I’m thinking, ‘I could totally make a scene on TV.’ It would be just like Charlie Brown Christmas. In the middle of service, if they could look at me and I could just start playing da-du-dat danana daa daa … all the kids would start dancing.”
It is easy to imagine that the fun doctor used to be a child just like you. But maybe not exactly like you. Maybe you are not a third-generation pediatrician, the son of a son of a doctor. Also, he doesn’t watch TV.
Playfulness is a skill in his line of work, and so if a new acquaintance happened to be 5 years old, yes, he would not hesitate to say hello on all fours. But the amusing guy is genuine, says Aimee Olinghouse, who works with him as executive director of the American Academy of Pediatrics’ Arkansas chapter, of which Kuo is president.
“He’s way up here intellectually. I mean like, whoa! But he relates so well to everybody. I think that’s what makes him such a great professor and great pediatrician,” she says, “his ability to relate across the board to folks.”
“He also, at a national level, is a leader in redesigning health care systems to better support families and provide better care,” says his colleague and friend Dr. Mary Aitken.
At 43, Kuo says, he’s about the age his father was when, a naturalized citizen who had emigrated from Taiwan, he opened his pediatric practice in New York. His dad built a following even though English was his fifth language.
Kuo took the more typical American college-to-med-school route. Then he was a general pediatrician, spending five years in a busy, four-doctor clinic in New Jersey. The practice saw many children with “complex special needs”: premature birth, genetic syndromes, chromosomal abnormalities, birth defects, breathing problems, mental retardation, cerebral palsy, developmental delay, poor growth, need for
a feeding tube, for an oxygen tank …
He grew and learned, Kuo says, but was dismayed by what happened to those children and their families in a system where specialists didn’t keep in touch with primary caregivers, avoidable problems snowballed into expensive catastrophes and care was fragmented, haphazard.
He remembers thinking, “I love what I do but there’s just so many parts of the system that conspire against us.” He didn’t want to spend the next 35 to 40 years watching it inadvertently wound his families. He wanted to step back and look at a map of the system itself, figure out ways it could be rearranged to work better.
In 2005, Kuo left private practice and its reliable income — this is when he and wife Kathrine gave away their TV — for a three-year fellowship in academic pediatrics at Johns Hopkins Bloomberg School of Public Health. Before the fellowship, he was a doctor trained in the handson assessment of individuals; afterward he was a doctor trained for hands-on assessment of systems.
“I think he is uniquely equipped to address things from different perspectives, which is why we’re really lucky to have him here,” says Aitken, who directs the division of the Arkansas Children’s Hospital Research Institute in which Kuo’s research is based — the Center for Applied Research and Evaluation.
“He’s a person who is so humble in his approach. He really just wants to do a good job, and it’s a real pleasure to work with him as a result, because he’s going to do the best he can. That’s usually very, very good — better than anybody else that I’ve seen.”
COLLABORATIVE LEARNING
Basically, he does quality improvement work. But he collects data within the living laboratory of bedside medicine. So this fun doctor giving kids named Zane the high-five is actually a scientist looking for better protocols in one of the most expensive arenas of medicine. He’s testing the efficiency of deliberately broad teamwork involving everyone who handles children with complex special needs.
Also, he’s collecting evidence to spotlight areas where the payers (oftentimes the state through Medicaid) could save money in the long run.
“These are kids that really are very vulnerable. They use a lot of health-care resources,” Kuo says. The primary resource they use, constantly, is their families. Families need training to be effective caregivers, but there is nobody else in the system more invested in the child: Families should be at the heart of the decision-making team.
And “right now,” he says, “I think families — the research will tell you — families feel lost.”
He has lived this feeling. Although she’s now a thriving 16-year-old, daughter Rebecca was diagnosed 11 years ago with juvenile arthritis, has undergone jaw surgery and takes “incredibly expensive” weekly injections. Hers is not a complex special case, but even though he and Kathrine have excellent insurance and understand medical jargon, the system frustrated them.
And so he admits, he can be “intense” in collecting data and in trying to pull independent entities into partnerships. Olinghouse says it can take “a minute” for new partners to realize he is here to help.
“He asks a lot of questions,” she says. Read into that statement a note of dread. She says the questions start to feel like he expects you to do a bunch more work than you’ve been doing already … until you realize “he’s not trying to make more work for you, he’s trying to help you. …
“I cannot tell you how nice he is. He has a heart of gold. I don’t think he ever thinks a bad thought about somebody. Any criticism that he ever provides is done in a positive way, so it’s always not, ‘You’re doing this wrong,’ but he kind of picks you up and redirects you.”
He has published a veritable peloton of unsexy, technical studies, the most recent being “Comparison of Health Care Spending and Utilization Among Children With Medicaid Insurance,” in the December issue of Pediatrics, the journal of the American Academy of Pediatrics. This study analyzed Medicaid data from 10 states to document which kinds of costs rise most as very sick children use more and more health care. (Hint: It’s not the payouts to their primary care doctors that rise the most.)
But the work focuses on changing the status quo to make it easier to deliver “the humanity we really need to be pushing,” Kuo says.
The spirit of his enterprise is right here in a shocking little essay Kuo wrote for Academic Pediatrics in 2007 while a fellow at Johns Hopkins: “Trust Is a Two-Way Street: Lessons Learned From a Dying Child” (bit.ly/1QV9A3C). In it he argues for trusting a family to know what’s best for their child, even when the child is dying and they do not want to fill out a do not resuscitate order. That was his patient, his patient’s family, his trust.
“What you see is what you get with Dennis,” Aitken says. “He is very straightforward and just as earnest and committed as he seems, every minute that I have known him.”
PEDIATRICIAN
Along with research, Kuo practices hands-on medicine as the primary care doctor for children with complex special needs. They account for three half-days of his typical workweek (or more — “Kids don’t wait for your clinical time to get sick”).
He sees his patients, about 100 of them, at the Medical Home Clinic in Children’s Hospital’s Sturgis Building.
This clinic cares for kids with the most difficult combinations of problems. It is arranged differently from a typical doctor’s office, to coordinate medical and nonmedical care. It emphasizes teamwork — with partners outside the four walls of the doctor’s office.
Kuo also cares for children with more typical health needs — in his UAMS College of Medicine professorial capacity as an adviser for the medical residents working at the Circle of Friends Clinic on 13th Street near the hospital. And “he has an important role in mentoring junior research faculty as well and others who are trying to balance a clinical and research program, because that’s a challenging role,” Aitken says.
Then there are his outreach projects, including the state chapter’s selection by the American Academy of Pediatrics to conduct yearlong, statewide quality-improvement initiatives. This Chapter Quality Network helps experienced pediatricians transform their practices in small but powerful ways. The program focuses on one diagnosis at a time — for example, asthma. Participating doctors come together for two sessions in what’s termed collaborative learning, and then they have 10 webinars on improving care for kids with asthma. In 2016, the focus will be attention deficit hyperactivity disorder.
The doctors collect their own data, so they’re able to see which work-flow changes actually make a difference for them.
Kuo, Olinghouse says, is “the national leader on practice transformation.”
“So you’ve got this super focused professor of pediatrics who is a teacher and wants to teach and train upcoming pediatricians, and he loves doing that. And then he loves seeing patients, and he is so passionate about that Medical Home Clinic and making sure that all the kids across the state have access to the services that they need,” Olinghouse says. “He is a convener of people. He is a leader. He is passionate and compassionate. He is strong in his community. He has an awesome family. Not to mention, he’s musically gifted, and everybody in his family either dances or sings. “And he’s funny.” Where do minds like this come from?
A Juilliard-trained pianist and teacher, his mother filled his childhood home with music. While his older brother blasted AC/DC and Black Sabbath from his room, Kuo played the piano very, very seriously. Still does. And “the piano training, the music training gives you a certain amount of dedication, discipline, structure,” he says. “I’m sure it wires your brain differently. I’m sure it makes your brain more organized.”
Kuo says he was the kind of kid who stared at maps and read about cities.
He grew up knowing that his grandfather had been a successful pediatrician in Taiwan. But before daughter Rebecca began interviewing relatives for a National History Day project when she was in the eighth grade at Pulaski Heights Middle School, Kuo assumed his family background was a “can-do” American tale about plucky immigrants in search of a higher standard of living.
Rebecca’s history shook his own status quo. He had no idea that World War II, Taiwan’s White Terror, martial law — fear — had played any role in his parents’ lives. Because he is not fluent in Chinese, he’s still not certain how to talk with them about it.
“I am still wrestling with why my parents never told me about it and why folks in my generation, the kids of the Taiwanese immigrants from the 1960s and 1970s, generally know little about it,” he says.
“The more I think about it, it really explains what I am today, because my parents invested so much … and, actually, my parents and all of their peers that came to the United States, they invested so much in trying to make sure that we would succeed.”
He never wants to take that for granted.