Naoto T. Ueno, MD, PhD, FACP, of the University of Hawai’I Cancer Center outlines the underrepresentation in clinical trials, the lack of permanent medical oncologists, and issues of trust affecting care for the populations living in Hawaii.
Historically, members of the Asian American, Native Hawaiian, and Pacific Islander communities have been underrepresented in clinical trials and also have trust issues that need to be addressed, explained Naoto T. Ueno, MD, PhD, FACP, director and interim program coleader, Cancer Biology Program, Translational and Clinical Research, University of Hawaiʻi Cancer Center.
He also highlighted the work of the Hawai'i Cancer Consortium to address issues of access and work to involve the community in care outreach.
This transcript was lightly edited for clarity.
Transcript
Americans of Asian and Pacific Islander heritage are historically underrepresented in clinical trials, which can have consequences when they take FDA-approved drugs. Can you discuss the activity on this issue?
Asian American, Native Hawaiian, and Pacific Islander—these 3 categories are completely underrepresented, even lower than [the situation with] Black or Hispanic patients. The FDA has almost close to mandated it to make sure that these populations are reflected, or the demographic is reflected, in the clinical trials.
When you look from the perspective for clinical trials in Hawaii, 75% to 80% is already represented by that population. The only thing is, for drug development, that has not happened. The reason is that we have not had early phase clinical research centers. Next year, we will have an early phase clinical research center that will be focusing on phase 1 and phase 2, and our interest is to make sure that pharmacokinetics and pharmacodynamics, the drug interaction, or how the drug concentration changes, there is no difference among these populations. We're also trying to understand the genomic behind what is resulting in a poor outcome, particularly for the Native Hawaiians.
What has the Hawai'i Cancer Consortium been doing to address historical challenges of clinical trial representation?
The consortium physicians—or researchers or the people who support the researchers—are reaching out to other neighbor island clinics so that we could bring clinical trials. And even before talking about clinical trials, we need to make sure that there is no professional isolation. Outside or off the main island, where our population is concentrated, we have a limited number of what we call permanent medical oncologists. We have a lot of locum tenens, and they continue to change; therefore, there's professional isolation ongoing.
Our goal is to provide statewide professional education to make sure that there is no isolation. We're aiming to create our own medical oncology fellowship so that our local people will become oncologists, and they will stay on the island. It’s one of the major efforts that we're pushing at this point.
Do issues of trust with the health system exist for Americans of Asian and Pacific Islander heritage and, if so, how are they being addressed?
Trust issues are a major challenge in Hawaii, and it's a historical aspect that we need to recognize that Hawaii belongs to Native Hawaiians. Basically, the businesspeople came and they threw away the Kingdom of Hawaii, and the statehood was somewhat controversial. There is a differing opinion about how we should be seeing our relationship to the United States. We recognize that we're part of the United States, but at the same time, it’s a sensitive issue among the Native Hawaiians, due to cultural suppression—the language was suppressed at the public school until the late ’70s.
So, there are a lot of trust issues here due to these events, which were very recent and many of the people who experienced [them] are still alive. Even if you take the Black community, slavery may be really a century ago. It's a painful process. So, when you have experience recently, it's a big issue.
How do we address this? It's not easy. We do have to consult with the community, and we do have a Community Advisory Board, but we think that's not good enough. So, we have a Native Hawaiian Advisory Board, we have a Pacific Islander Advisory Board, and we also have a Filipino Advisory Board. These are the 3 areas that we have a focus on so that we could make a larger impact.
This does not mean that the other categories are not important. It's just that from the health disparity perspective, for Native Hawaiians and Pacific Islanders, traditionally, it's been a big issue because of the high cancer mortality. The Filipino population is rapidly increasing. People are moving from the Philippines, and they definitely have language and access issues. So, we're trying to define the population and try to [conduct] outreach and embed the community outreach staff to go out there so that we could have a better communication.
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