In his lifetime, Ryan Hiroshi "Keliʻi" Shontell, PhD, has witnessed many close to him succumb to cancer. From a young age, he noticed stark contrasts in his family's health, particularly between family members of his Native Hawaiian and Japanese heritage. It's part of what drew him to earn his PhD at the University of Hawaiʻi John A. Burns School of Medicine and continues to drive him to pursue his MD. He hopes to use his platform as a future physician to shed light on the harmful impact that occurs when data on the Native Hawaiian and Pacific Islander population (NHPI) is aggregated, or compiled together, with data on, often healthier, Asian populations.
"My father, my grandmother, great grandfather, grandfather– there's tons, tons of cancer on my Hawaiian side. So you know, looking at the data from the big universities on the mainland, and then (having) my own lived experience with my family… I think it's disingenuous for those universities to be making these blanket statements about our population," Shontell said.
Although the NHPI population has been a United States federally defined race standard since 1997, there has been limited attention to disaggregating NHPI health data by labs and universities that publish in high-impact journals. This leads to NHPI health disparities being swept under the rug despite having a significant difference in mortality rates compared to Asians.
"It assumes that Native Hawaiians are doing fine, nothing's wrong with them. But if you look at data from the UH Cancer Center and the Hawaiʻi Tumor Registry– that's not the case. In their data, Native Hawaiians across the board have pretty dismal outcomes for cancer, said Shontell, referencing the huge disconnect between the local research focused strictly on NHPI health outcomes than when other groups used NHPI-Asian aggregated data.
For example, the
Taparra Lab recently uncovered that melanoma mortality rates in NHPI were nearly 40% higher than Caucasians. However, that statistic was previously masked as the NHPI population was essentially lost in the bigger pool of Asian-American data, where as a whole, Asian-Americans were reported to have fared better than Caucasians.
This is one of the key findings from the Taparra Lab's recent paper published in the Journal of the American Medical Association. "
Racial Disparities in Cancer Stage at Diagnosis and Survival for Adolescents and Young Adults," documents the first time that anyone has disaggregated NHPI and Asian cancer data for adolescent and young adult (AYA 15-39 years old) patients. They found that NHPI patients are at significantly greater risk for late-stage diagnosis and for dying from cancer overall, including cervical, colorectal, lymphoma, and melanoma.
A mentorship with Taparra LabImmediately after receiving his PhD in 2023, Shontell sought mentorship from Kekoa Taparra, MD, PhD, MPH, and began to work with a large network of individuals that make up the Taparra Lab, whose mission is rooted in exposing indigenous invisibility by emphasizing the existence of NHPI populations in scientific research and health data collection.
"Mentoring Dr. Keliʻi Shontell has been an absolute privilege. He's a graduate of Kamehameha Schools, which is a significant point of pride for both of us as Native Hawaiians. Dr. Shontell's dedication to improving the health of our communities back home in Hawaiʻi is remarkable. From the very start, he's brought a deep passion for addressing the health disparities that disproportionately affect Native Hawaiians and other underserved groups. His hard work and meticulous approach make my job as a mentor so much easier," said Taparra.
"Not only does he produce high-quality research, but he's also committed to challenging and correcting the narratives that have historically wronged our people. As the leader of the Taparra Lab, I feel incredibly fortunate to work alongside someone like him, whose commitment to advancing our lāhui's health keeps our collective mission front and center," he adds.
More on the studyShontell says that this research highlights additional questions that need to be explored.
"The big glaring gap we have is that these (NHPI) patients aren't being diagnosed at later stages, but they still have really dismal survival rates so that needs to be investigated to try to determine what we can do, whether it's advocating for more directed intervention, more funding to public health programs or more funding for screening programs to be able to decrease that gap in survival between Native Hawaiian Pacific Islander patients and white patients," Shontell said.
He and the Taparra Lab also wrote an editorial in JAMA,
"Race Disaggregation and Racial and Ethnic Disparities in US Youth Mortality", as a companion piece to their recent publication. The editorial was written in response to a separate publication whose authors made conclusions based on aggregated Native Hawaiian and other Pacific Islander youths with a much larger Asian population. The editorial urged the medical research community to "strive to be fully inclusive of all federally defined racial and ethnic groups to avoid perpetuating structural racist practices that ignore marginalized members of our society."
Within the UH system and nationally, JABSOM's Native Hawaiian Center of Excellence Director Kanoho Hosoda has led various reporting efforts for programs that serve underrepresented minorities in science, technology, engineering, mathematics and medicine. She emphasizes that data resolution– the level of detail in which data is measured– is critically important for understanding the unique challenges faced by underrepresented minorities and assessing the effectiveness of support services.
"In any scientific endeavor, if data is not collected and analyzed with sufficient granularity, the full scope of issues, particularly those affecting minority populations, may be overlooked," said Hosoda. "Keli'i Shontell's work provides an excellent example of how disaggregating data can improve data resolution, leading to more accurate conclusions. In this case, higher-resolution data revealed that Native Hawaiian and Pacific Islander (NHPI) patients are at significantly greater risk of late-stage cancer diagnoses and poorer prognosis."
She adds, "With the advent of new technologies and resources, I am excited to see how the next generation of students will reanalyze historical datasets to advance our understanding and treatment of diseases among NHPIs and other underrepresented minorities."
Throughout the rest of his journey as a JABSOM medical student and working with the Taparra Lab, Shontell hopes their efforts will eventually lead to more researchers worldwide, equitably producing and reporting on NHPI health data to benefit future generations of the people of Hawaiʻi and the Pacific.
"There's just so little data available to improve (NHPI) outcomes. It's one of my biggest goals– to fill some of these gaps that lead to poor outcomes in our communities so that others don't have to go through these kinds of family hardships with this disease (cancer)," Shontell said.