BY KATHARINE SHILCUTT
A unique opportunity was presented to Rice bioengineering students last summer through Rice’s Medical Humanities Research Institute (MHRI): eight weeks of clinical immersion with physicians at Texas Children’s Hospital (TCH) and the Texas Heart Institute figuring out the barriers to good outcomes for patients with tracheostomies, those undergoing peritoneal dialysis and those who require pediatric hemodynamic monitoring. In most cases, the patients were children or infants.
Sanjay Soni, a junior bioengineering major, said that when he and his cohort initially looked into the high infection rates for peritoneal dialysis, their first engineering-focused instinct was to try to design a solution to detect infections earlier. However, when they interviewed nephrologists and patient caregivers — usually the childrens’ parents — they learned the real issue was not the technical design of the dialysis equipment, but the environmental and educational factors affecting patients at home.
Some of the caregivers, Soni said, didn’t speak English as a first language, which presented a barrier to understanding advice for taking care of the catheter site. Others were distressed at having to handle such delicate medical equipment and faced anxiety over potentially worsening their childrens’ complex health issues due to their inexperience.
“It clicked for me that this is something you wouldn’t see if you’re an engineering team, because there’s very little research done about the emotional aspect of how humans interact with devices,” Soni said. “The biggest hint you would find of this problem existing is that there are disparities in the levels of infection rates — and even if you saw that, you would think, ‘Oh, maybe the design of the catheter site isn’t improved enough.’”
Through observations on rounds with doctors and conversations with the patients’ caregivers, Soni and other Rice students discovered that factors that often seem intangible, like emotion, actually play an enormous role in how parents are able to care for their children after they’re discharged with a very complex diagnosis, placing incredible pressure on the parents.
“Emotion is a factor that is not usually included in engineering design or even in clinical care in an explicit way, and yet it’s the most important thing to the parents,” said Kirsten Ostherr, the Gladys Louise Fox Professor of English and founding director of Rice’s MHRI. “It really infuses a humanist perspective into what could be a very technical kind of process, and the students were able to identify that and ask, ‘OK, how can we bring this into the way we think about engineering design?’”
There is nothing quite like Rice’s MHRI, which is the only research institute in the U.S. solely focused on translational humanities research in health care settings.
“It’s a really exciting new initiative to bring humanities research into medicine in a robust, sustained way, so we can build on the collaborations we already have with partners in the Texas Medical Center (TMC) and really elevate the kinds of contributions that humanities can bring to health care,” Ostherr said.
The MHRI builds on years of partnerships established by the medical humanities program at Rice, which grew out of demand for medical humanities courses first taught at Rice in 2006.
“A lot of students decide to go into medicine because they want to be working one-on-one with people, helping them feel better,” said Melissa Bailar, MHRI executive director, associate director of the medical humanities program and a senior lecturer in medical humanities.
“But then in their premedical degree program and in medical school itself, there’s such an emphasis on the sciences that the human aspect was getting lost in the mix,” Bailar said. “Our students were interested in having classes, talks and events related to how people experience medicine, whether as practitioners or patients or caregivers.”
This interest produced a popular medical humanities minor, and in 2019 a groundbreaking medical humanities program that provides humanities majors with a facilitated pathway to attending The University of Texas McGovern Medical School. After they successfully finish the program and meet its requirements, Rice students gain immediate admission to McGovern Medical School.
Along the way, Ostherr and her colleagues across the university forged collaborations with nearly every hospital in the TMC, creating opportunities for faculty and students to pursue humanistic-oriented work. Medical humanities students are required to do a research practicum with a TMC partner, in fact.
“From the start, a key component was these practicums in which students are working with institutions in the TMC or other local organizations related to health,” Bailar said.
Other projects included students embedding for yearlong projects on research teams with TCH, Baylor College of Medicine’s Center for Ethics and Health Policy and the Michael E. DeBakey VA Medical Center.
“These students were doing incredible research projects that were making a big difference in patients’ lives by paying attention to things like the ways people talked about their lived experience,” Ostherr said. “But those projects were not being developed into bigger research undertakings, and we saw that an institute would give us the opportunity to build the structure to have sustainable, long-term relationships where we could really make a huge impact with the work we do.”
That led to the official creation of the MHRI in 2023. And in under a year, the institute had already convened some of the world’s leading international researchers for a two-day workshop at Rice’s Paris campus in May 2024 to address the main questions posed by the institute itself: how social, cultural and ethical forces shape patients’ lived experiences, why health care must treat the whole person, and what medical humanities can do to make medical interventions more equitable, effective and accessible.
A lot of things in medicine are nuanced elements of a person’s care that are not easy to quantify. You have to look at the whole human to really understand what matters most to their health outcomes.
— Kirsten Ostherr
Paul Checchia is a pediatric intensive care physician and cardiologist at TCH. And for the last 10 years, Checchia said, he’s been associated with “anything that I can get my hands on when it comes to the combination of medical humanities and Rice University.”
Checchia’s undergraduate degree in English literature has provided a crucial narrative lens he applies every day to better understand his patients and their needs.
“Medicine is really just listening to somebody’s story and trying to then piece together what’s wrong with them,” Checchia said. “Every single patient has a story to tell.”
As a physician who’s long advocated for the humanities within medical education, Checchia was excited to work with Ostherr. He’s helped create a TCH working group to brainstorm research project ideas with the MHRI and is currently the inaugural MHRI clinician fellow, collaborating on a new project with TCH and Houston Methodist on delirium research.
“We don’t want any patient, especially not a child, to be in pain,” Checchia said. But one of the side effects of pain medication is delirium. And delirium is only well studied in adults before they reach an advanced age.
“Delirium is a long-term problem, and everything in health care wants to be very short term, and we lose that story,” he said. “How can we listen to the story of the caregivers and piece together what is delirium?”
Rice students have been interviewing patients, their families and other care team members, and have begun to build a story around that data to create a better long-term understanding of what delirium looks like at all ages so it — and pain — can be better managed.
Checchia has worked at other institutions where universities enjoyed similar geographic proximity to a large medical center. “But nobody seems to take advantage of it in the same way as Rice,” he said.
“Rice is very vibrant and innovative and has its eyes on the future, right at the time when the medical center is saying, ‘Well, what can we do next?’” he said. “We’ve learned to cut straight and sew straight, but now we have to do everything else right, and this is part of that ‘everything else.’”
For Bailar, another strength of the MHRI is its location at a top-tier research university that is not affiliated with a medical school, which opens up the possibility to work with a variety of medical schools, hospitals and health organizations.
“Having a close affiliation with the TMC means we can see how the work we’re doing is implemented into clinical practice, into medical research, into the way studies are designed, into the way the technology is designed,” she said.
In the year since it was launched, the MHRI has dramatically expanded the work already being done through the medical humanities program.
In addition to other clinical immersion programs, Rice undergrads have been working with TCH physicians on projects regarding pain perception in the pediatric intensive care unit and inclusion of patient narratives in the electronic medical record. Its Sawyer Seminar series has brought six lectures to campus to critically examine emerging digital health technologies. And plans for future research summits like the one in Paris are already underway.
“We’re going to change health care,” Bailar said. “We’re going to change the world, really, in terms of the idea that health is not only a biological issue, but that health is about the whole person — and that’s a radical shift in perspective.”
Ostherr, too, is optimistic about the much-needed paradigm shift taking place that the MHRI is uniquely poised to advance.
“A lot of things in medicine are nuanced elements of a person’s care that are not easy to quantify,” she said. “You have to look at the whole human to really understand what matters most to their health outcomes.”
After she presents on the MHRI’s work, she said, audience members will often come to her and share their own medical experiences.
“They’ll say, ‘My mom had a bad health care experience,’ or ‘My doctor had a terrible bedside manner and I just don’t feel like I can trust them,’” Ostherr said. “People want a trusting relationship with health care but feel that it’s broken — and people see the work we’re doing as a pathway to rebuilding that trust.”
“It’s incredibly exciting to be doing this work at this time, because it seems that the time is ripe,” Ostherr continued. “People are ready for it, and we’re in the right place to be doing it.”