What community-engaged research means for Native Hawaiians and Pacific Islanders

Most universities have tried to be forces for good, helping communities that don’t have the same resources. Researchers have applied their expertise to measure the effects of pollution, provide medical care for people experiencing homelessness, and learn what contributes to health disparities among different racial and ethnic groups.

Despite the announced intentions of projects that will highlight community-engaged research, sometimes members of those long-overlooked communities end up being treated more like research subjects than collaborators.

Calvin Chang, JD, director of the Native Hawaiian and Pacific Islander (NHPI) Data Policy Lab at the UCLA Center for Health Policy Research, led by Dr. Ninez Ponce, professor and chair of the UCLA Fielding School's Department of Health Policy and Management, says that when it comes to connecting with Native Hawaiians and Pacific Islanders in particular, researchers need to embrace humility.

“I think it’s more important to the community that you place yourself in service to the community,” Chang said.

The NHPI Data Policy Lab, which launched in August 2020 in response to the COVID-19 pandemic’s disproportionately devastating impacts on NHPI communities, addresses striking gaps in data and research on NHPIs and strives to expand NHPI data capacity.

In this Q&A, Chang explains how a community-centered approach begins with how people introduce themselves, how history created distrust, and how researchers and scholars should expand their concepts of diversity.

How do you define community involvement and community partnership when it comes to institutions working with Native Hawaiian and Pacific Islander communities?

Calvin Chang: Transparency, accountability, and participation. One form of transparency can be seen in something as simple as an introduction. When people in the NHPI community ask where you’re from or what you do, they don’t simply mean, “What is your job?” They really want to know your lineage, your genealogy, your family, so that they can start seeing whether there is a connection. Even if there isn’t a familial connection, is there a connection in terms of the values that you live by or your community’s cultural values? That really humanizes the relationship as opposed to keeping it simply transactional between an academic researcher who wants X in exchange for Y.

For example, if you introduce yourself using titles, positions, terms that elevate you above the community, which is very common in Western introductions, it seems as though you’re trying to claim that position of authority.

It’s seen as a sign of confidence in one’s own self when someone could have very formal titles but prefers to be referred to by their first name or a nickname. To express that you would like to be referred to on a more informal basis closes that gap between people.

How does history affect the creation of trust between researchers and NHPI communities?

During the 1950s, the U.S. government conducted numerous nuclear weapons tests in the Pacific, specifically around the Marshall Islands. The U.S. military has said that this was never done with the intention of experimenting on humans in terms of the impact of radiation. But they were also still so careless that when they tested Castle Bravo, which is the largest hydrogen bomb weapons test ever conducted in the history of the U.S., it was in very close proximity to populated islands that were not evacuated.

What happened to come out of that was a report detailing the impact of radiation on the Marshallese. It’s very hard to parse how an entity as well-funded as U.S. military, especially at that time, could have claimed that there was no intention to test and research on human beings without spending the time to evacuate these islands.

How do you define “accountability” in this context and what role does it play?

Oftentimes, there’s an imbalance in the power dynamic. Academics could have millions of dollars in funding. They have specific expertise and access to professional networks that the community may not have. And so whatever resources flow into this relationship often comes from the researcher’s side in terms of things of monetary value. And that’s a power dynamic that I think has made the community quite wary of building relationships with researchers who aren’t interested in a partnership, but more in terms of seeing the community as subjects to be experimented on.

When there’s accountability, true accountability, I think that allows the community to have some power in the relationship to determine what direction projects will head, who gets to benefit, who gets ownership of either the project or anything that gets created out of the project, including the data. And there needs to be a governance structure that allows the community to say, “we are not comfortable with doing this, therefore we won’t.”

How do you think “participation” should work?

I’ve found it very important to make sure that when there is outreach, that people are very mindful of the diversity within the community. Just because one group of Pacific Islanders participates doesn’t mean that they can speak on behalf of everyone.

Within communities you have gender diversity and gender dynamics. You don’t have traditional male/female binaries. For Native Hawaiians, one of the words we have in our language for an expansive gender spectrum is māhū, which is a valid and respected identity. Making sure that there’s diversity in terms of that level of representation, in terms of gender representation, in terms of generational representation, including both elders and youth, representation in terms of folks who may have grown up on the islands versus those in the diaspora.

If a project is something that’s supposed to involve Pacific Islanders as a whole, you need to have folks from Melanesia, Micronesia, and Polynesia. That’s something that I think the NHPI Data Policy Lab has tried very hard to do.