HONOLULU (KHON2) — The John A. Burn School of Medicine (JABSOM) is shining a light on hidden health disparities and showing the world the importance of disaggregating data.
Ryan Hiroshi Keliʻi Shontell has embarked on a journey to uncover the hidden truth about Native Hawaiian and Pacific Islander health which will shine a light on the systemic racism that led to entire people groups being “lost in the data”.
A second-year medical student at the JABSOM, Shontell began his journey into medicine driven by personal experiences and the need for change.
Born and raised on Hawaii Island in Hāwī, Shontell’s family history of cancer and the challenges of accessing healthcare in his rural community inspired his passion for medical research and health equity and led him to follow a journey to becoming a physician and medical researcher.
A call for accurate representation
Shontell’s research underscores a critical issue in healthcare: the problematic aggregation of Native Hawaiian and Pacific Islander (NHPI) data with Asian data.
This practice has historically led to misleading conclusions and inadequate healthcare responses, highlighting a need for more accurate representation of NHPI populations.
Historical aggregation and its consequences
Shontell points out that health data for NHPI and Asian populations have been historically aggregated into a single category, which has skewed the results and led to misinformed healthcare policies.
“Historically, when you look at data in the literature, Native Hawaiian and Pacific Islander patients and Asian patients have been lumped together or aggregated into a single racial group,” explained Shontell.
This aggregation has particularly adverse effects because NHPI populations are significantly smaller compared to broader Asian populations. It leads to their health issues being obscured.
This misrepresentation results in a lack of tailored healthcare responses for NHPI communities.
Impact on health data and disparities
The aggregation of NHPI and Asian data has led to misleading conclusions about the health of NHPI individuals.
For instance, Shontell discusses a 2024 JAMA paper that reported generally good survival rates for aggregated groups:
“In that paper they looked at adolescent and young adult patients… they had aggregated NHPI and Asian patients into a single category… they said specifically in those conclusions that NHPI patients were doing just fine essentially,” said Shontell.
Contrarily, Shontell’s own research found significant disparities, particularly in melanoma survival rates.
“For NHPI patients, if you have melanoma, you are 38% more likely to die from that melanoma diagnosis than a white patient… the rates for melanoma… are pretty staggering,” he pointed out.
Systemic issues and data disaggregation
The aggregation issue is compounded by systemic problems within healthcare data collection and research. Shontell highlighted the challenges in gathering disaggregated data
“One, it’s easier just to lump Asian and Pacific Islander patients in a single blanket category,” Shontell said. “One of the issues has been sample size.”
Moreover, he noted that despite revisions in 1997 to disaggregate data, the problem persists.
“Despite the 1997 revisions for OMB, there has been a lot of literature leading all the way up until current day… where NHPI and Asian data is aggregated, he noted.
This continued aggregation results in NHPI populations being “virtually invisible” in policy decisions, further exacerbating disparities in healthcare funding and interventions.
“If we’re hidden in the data, we are virtually invisible in the eyes of policymakers,” explained Shontell. “This has led to these huge disparities in health care that are really lowering our lifespans.”
Call for action and improved representation
Shontell advocates for more accurate data collection and better representation to address these disparities
“The implications are huge, and there needs to be action made moving forward to actually implement any changes in order to close some of these gaps in health care,” he pointed out.
He also stressed the importance of patient education and self-advocacy, particularly in recognizing and addressing health conditions like melanoma where death rates amongst NHPI is nearly 40%.
Shontell’s research highlights a significant issue in healthcare data representation. The historical and ongoing aggregation of NHPI and Asian data has led to misrepresentations of NHPI health issues and inadequate responses to their needs.
Hence, addressing these problems requires more accurate data collection, better representation in research and proactive healthcare policies to reduce disparities and improve health outcomes for NHPI populations.
The legacy of Senator Daniel Kahikina Akaka
The push to separate NHPI data from broader Asian categories is not new.
Senator Daniel Akaka championed this cause in 1997 because he recognized that combined data masked significant health disparities.
Shontell emphasized that despite this push, “there are still papers being published where NHPI and Asian data is aggregated.”
This ongoing issue highlights the importance of disaggregating data to reveal true health disparities affecting NHPI communities.
Health disparities unveiled
Shontell’s research has uncovered alarming disparities in cancer survival rates between NHPI and white patients.
In a recent study, Shontell and his team found that NHPI patients face significantly worse outcomes for several types of cancer. For instance, NHPI patients with melanoma are 38% more likely to die from the disease compared to white patients.
“We found that NHPI patients are more likely to be diagnosed with melanoma at a later stage, which correlates with that increased risk of dying from the disease,” Shontell said.
This late diagnosis is critical because melanoma, especially in darker-skinned individuals, can be very aggressive.
The study also revealed higher mortality rates for lymphomas, colorectal cancer, and cervical cancers among NHPI patients.
Surprisingly, these cancers did not show later-stage diagnoses, suggesting other factors might be at play.
“There’s access to care, utilization of care, socioeconomic status, and social determinants of health that need further investigation,” Shontell noted.
Why disaggregated data matters
The significance of Shontell’s research extends beyond individual health outcomes. Accurate data is essential for policymakers to make informed decisions about healthcare funding and public health initiatives.
Aggregated data often leads to inadequate responses because it can mask the specific needs of smaller populations.
“If we’re hidden in the data, we are virtually invisible in the eyes of policymakers,” Shontell explained.
This invisibility results in a lack of targeted interventions and funding for NHPI communities, perpetuating health disparities.
The impact of aggregated data
An example of the consequences of aggregated data can be seen in the COVID-19 pandemic. Shontell noted that some states collected aggregated data, which suggested that NHPI populations were doing well during the pandemic.
However, the reality was different.
“States that were collecting disaggregated data showed that NHPI patients had some of the highest mortality rates for COVID,” he said.
It was only after public health workers and advocates raised concerns that states began to collect more specific data, revealing the true extent of the disparities.
Educating the public and advocating for change
One crucial aspect of Shontell’s research is patient education. For instance, melanoma has traditionally been considered a disease affecting lighter-skinned individuals.
However, darker-skinned individuals, including NHPI patients, can also develop aggressive forms of melanoma.
Shontell pointed out that “darker-skinned patients have a tendency to develop melanomas that tend to be very, very aggressive and get diagnosed much later.”
A historical figure like Bob Marley, who died from melanoma in his toe, illustrates the dangers of late-stage melanoma in darker-skinned individuals. Shontell emphasized the importance of being vigilant about skin changes and advocating for early screening.
Addressing systemic issues
Shontell’s research highlights broader systemic issues in healthcare. The disparities faced by NHPI patients are part of a larger pattern of inequities affecting various minority groups.
“It’s not just an NHPI issue. Even within the Asian category, Filipino patients also have dismal survival rates for many chronic diseases,” Shontell observed.
These disparities are indicative of systemic racism and the need for more inclusive and accurate data collection.
“It’s a systemic issue, really,” Shontell said. Addressing these issues requires dedicated efforts from researchers, policymakers, and healthcare providers.
The path forward
The path to closing these health disparities involves several steps. Firstly, there needs to be continued advocacy for disaggregated data collection. Shontell’s work is a crucial part of this effort, but it must be supported by policy changes and increased funding for targeted research.
“Disaggregation research is a good starting point, but there needs to be action made moving forward to actually implement any changes in order to close some of these gaps in healthcare,” Shontell emphasized.
Secondly, increasing awareness and education about the health risks faced by NHPI populations is essential. Healthcare providers and communities need to understand these risks to ensure better early diagnosis and treatment.
Systemic changes in healthcare policy and practice are necessary to address the root causes of health disparities.
This includes addressing social determinants of health, improving access to care, and ensuring that all populations receive equitable treatment.
Shontell’s research sheds light on the critical need for disaggregated health data and its impact on addressing health disparities.
By revealing the hidden struggles of NHPI populations, Shontell’s work advocates for more accurate representation and targeted interventions.
As Shontell’s research continues to influence the field of medicine, it serves as a reminder of the importance of equity in healthcare.
The journey toward closing health disparities is ongoing, but with continued efforts and advocacy, there is hope for a future where every community receives the care and attention they deserve.