Hawaii’s Covid-19 data stands out nationally for how much detail is available about specific race groups under the Asian American and Pacific Islander umbrella.

The Centers for Disease Control and Prevention published a study on Sept. 17 written by current and former Hawaii Department of Health officials, scholars from the University of Hawaii and others that gives the most detailed look yet at how the pandemic has disparately affected communities in Hawaii.

Researchers and community advocates say that disaggregated data is necessary to ensure those most affected by the pandemic are getting resources they need. Detailed race data also helps people responding to the pandemic better understand what’s driving disparities and design culturally and linguistically appropriate interventions.

Brittany Morey is an assistant public health professor at the University of California at Irvine and a faculty advisor of the Native Hawaiian Pacific Islander Data Policy Lab at the University of California at Los Angeles.

She said one of her fellow members of the data lab helped persuade the health department in Riverside, California to disaggregate Pacific Islanders in its Covid data. Sure enough, Riverside found Covid disparities affecting that community and that knowledge helped secure funding to address the problem.

“Disaggregated data is powerful at the local and the state level in order to garner resources for those who need it the most,” said Morey, who was the lead author of a paper this month on data reporting gaps among Pacific communities.

The CDC analysis compared Covid-19 case and death rates in Hawaii for 20 different races, including five under the Asian umbrella and 11 categories of Pacific Islanders.

The study found Marshallese, other Micronesians and Samoans had the highest rates of Covid-19 between March 1, 2020 and Feb. 28, 2021. The death rate was highest among people categorized as “Other Micronesians,” more than seven times the state average. Samoans had the second-highest Covid death rate, about twice the state average.

The study didn’t include data from the most recent delta surge that has disproportionately infected the Native Hawaiian community.

But it did include new data on Hawaii’s Korean and Vietnamese communities, as well as previously unreleased details about Pacific communities such as Tongans and Fijians. Among the Asian communities studied, Covid cases were most common among Hawaii’s Filipino and Vietnamese residents.

The study showed Covid case rates among Hawaii’s Black community were higher than all the Asian communities, but still below the statewide average. For the time period studied, cases among Native Hawaiians were also below average.

Data released by the state Department of Health shows that Covid cases among Native Hawaiians shot up in July 2021, although so far they remain underrepresented in Covid deaths.

Morey said she doesn’t know of any other states that break out Asian Americans and other Pacific Islanders to the degree that Hawaii does. Even California, which has a large Filipino community, doesn’t disaggregate Filipinos in its Covid data online, something Hawaii has been doing for more than a year.

Dearth Of Data Nationally

Part of what makes Hawaii’s data stand out is how little is available nationally. Morey’s study found that more than half of U.S. states don’t report Covid-19 case or death rates for the category of Native Hawaiian and other Pacific Islanders, despite 1997 federal guidance recommending that the community be separated from Asians and other communities.

Daniel Wang, an internal medicine resident at the University of California at Los Angeles who was the lead author of a paper last year about Covid-19 rates among Asian Americans and Pacific Islanders in the U.S., said race data can be tricky because it’s personal and subjective, and isn’t always recorded accurately. Still, he believes disaggregation of Pacific Islanders from Asian American communities provides the best glimpse into what’s happening during the pandemic.

Unfortunately, that’s uncommon given how relatively small the communities are.

“That’s a pity because that doesn’t mean that they don’t exist. But on paper they don’t, which then makes them an exquisitely vulnerable group,” he said. “These are lives that if we don’t count, they get forgotten.”

That’s a concern for Tina Tauasosi-Posiulai, a community partnership and research specialist at the University of Hawaii, who said Samoans are often overlooked when they’re lumped into other groups.

“If you look at AAPI, it’s like a silent PI,” she said. “They only put us there so that the number can be increased or higher but when it comes to distribution of resources, we don’t normally get anything.”

That can also happen when money goes to the broad category of “Native Hawaiian or Other Pacific Islanders,” Tauasosi-Posiulai said.

“When funding comes to Native Hawaiians, most of the time Samoans don’t get anything,” she said, adding that last year some Native Hawaiian-focused organizations generously shared funding during the pandemic.

Morey from UC Irvine said she likes how the authors of the CDC study chose to present population data based on people who identified at least partially with each race, instead of lumping multi-racial people into a separate category.

That’s particularly important for Pacific communities where so many are multi-racial, she said, adding failing to count people who are partially one race can make communities appear smaller than they really are.

Hawaii “can be an example for the rest of the country in how to handle race and ethnic classifications,” she said.

Sheri Daniels, who leads the nonprofit Papa Ola Lokahi that’s dedicated to Native Hawaiian health, said she’s proud of how the state heeded calls to disaggregate Covid data on Native Hawaiians and hopes it can be extended to other types of data.

“This is our homeland,” she said. “This is our right as Kānaka here in Hawaii to have that.”

The ability to see how the delta variant is driving up cases among Native Hawaiians specifically has galvanized the community into action.

“What is just amazing and what I’m not surprised by is the rallying of community leaders and organizations,” she said.

Wang said the way that Hawaii has been working with community groups to guide the data collection and trying to implement community-specific Covid responses is another best practice.

“That is more than most places are able to do but that really is what we should be doing everywhere,” he said.

Data That’s Still Missing

Joshua Quint, an epidemiologist at the Hawaii health department and lead author of the CDC study, said the data comes with several limitations. In the study, the data isn’t age-adjusted and 18% of the race data is missing.

Disparities are also subjective depending on what the reference points are. For example, Quint said he and other study participants made a conscious decision not to use how white people are experiencing the pandemic as a baseline, even though that’s common in other racial inequity analyses.

Doing so “defines everyone else in relation to the white experience and it sort of gives whiteness a prime position,” he said, adding that it can be beneficial sometimes to make that comparison.

Quint said listening to community calls to disaggregate the Covid data allowed the state to identify disparities they wouldn’t have otherwise known about.

If that hadn’t happened, he said, “The Pacific Islander experience would’ve been totally washed out by the Native Hawaiian group because the Native Hawaiian group is so much bigger.”

But there’s still more specificity that Hawaii could provide. Wang from UCLA said he would have liked to see Covid case data on the Hispanic or Latino community. Tauasosi-Posiulai from the University of Hawaii questioned why the “Other Micronesian” category wasn’t broken down further, given how large it was.

Quint says that the state has Covid case count data for Micronesian communities such as Chuukese, Kosraeans and Pohnpeians but couldn’t include them in the study because researchers couldn’t find reliable population counts.

Hawaii hasn’t published data on Hispanic or Latino Covid rates because that ethnicity data is missing at a much higher rate than race data.

“It’s an indication that we need to do either more training or update our processes to make it easier to get that data element completed,” Quint said.

Agnes Malate is one of many Filipino advocates in Hawaii who have been working to get her community vaccinated. But one problem is that she doesn’t know how many Filipinos have gotten their shots.

The state health department planned to roll out data on Filipinos’ vaccination rates by April but that didn’t happen. Quint said it’s because there was and continues to be too much missing data to determine what percentage of Hawaii’s Filipino community is vaccinated.

“We can’t really draw conclusions from such a small subsample,” Quint said, explaining the vaccination data system nationally didn’t include detailed race data for Filipinos until April. “It just goes to show these systems and standards really need to be in place in advance.”

Malate said the lack of data makes it hard to figure out if her community’s vaccination efforts are working.

“We understand that they’re working on it but the urgency is now,” she said. “We really need that data.”

Vaccination data that does exist shows Native Hawaiians have below average vaccination rates whereas other Pacific Islanders have vaccination rates that are on par with the state average.

The latter is good news for Josie Howard’s Chuukese community, who have been among the hardest hit racial groups throughout the pandemic.

“Definitely it’s a success. We mobilized our community,” she said. But Howard still worries that the state’s Covid data may be an undercount since there’s relatively less contact tracing during the delta surge.

What the data doesn’t capture is the emotional cost of the pandemic, which weighs heavily on her and others working on the front lines.

“The experience with Covid in our community, it does make me feel very exhausted because I feel like it never ends for us,” she said. “I see more death this time around than before.”