Researcher Committed to Raising Awareness of Research Gaps for Alaska Native Populations Commends Progress Amid Continued Distrust

Conversation with Dr. Denise Dillard, Washington State University

Denise Dillard, Ph.D., M.S., is a psychologist and tenured professor at Washington State University’s (WSU) Elson S. Floyd College of Medicine. In 2023, she joined WSU as the co-director of the Institute of Research and Education to Advance Community Health, a research unit with 60 faculty, staff, and postdoctoral students dedicated to promoting health and health care equity among American Indian and Alaska Native (AI/AN), Native Hawaiian, Pacific Islander, Latino, and rural populations. She is of Inupiaq heritage.

Prior to joining WSU, she worked at Southcentral Foundation (SCF), a Tribal health organization in Anchorage, Alaska, which provides primary care services to 65,000 AI/AN people.

As SCF’s director of research between 2008 and 2022, Dr. Dillard led a diverse portfolio of health research projects addressing the wide-ranging health needs and priorities of the Native community. Using community-based participatory research approaches in partnership with community members, providers, and leaders (i.e., clinical, administrative, Tribal), she’s led projects focused on substance misuse, behavioral health, including post-traumatic stress disorder and suicide, chronic disease, such as hypertension and the practice and ethics of research with AI/AN people, including genetic research.

She has served as the principal investigator on several NIMHD-funded grants, including “Marshallese: Alternate Surveillance for COVID-19 in a Unique Population” (5R01MD016526-03) and a community engagement and dissemination core (5U54MD000507-19).

Dr. Dillard received her Ph.D. and M.S. in counseling psychology from Colorado State University and her B.A. in psychology/sociology from the University of Alaska.

Q&A with Dr. Denise Dillard

What is your project’s goal, purpose, and aim?
I have a very diverse portfolio, which includes projects focused on chronic diseases, such as hypertension, Alzheimer’s disease, and sleep apnea. I’m also focused on training scientists to conduct research with Indigenous populations.

How is your work advancing the science of minority health and the health of populations that experience health disparities? Are you seeing specific changes in particular communities or groups?
Raising awareness among funders and other scientists about critical gaps in research with Alaska Native populations is one important aspect of my work. Funders and scientists need to understand the sources of distrust that impact peoples’ willingness to participate in research, as well as geographic and other challenges that exist when doing research with Indigenous people.

When it comes to increasing awareness about sources of distrust, a piece of information I see surprising research funders and scientists is this direct quote from a 1980s New York Times article. Researchers studying alcohol use among the Inupiat people in Barrow, Alaska, provided the quote. They described Inupiat people as “not a collection of individual alcoholics, but a society which is alcoholic and therefore facing extinction.” To this day, this quote gets cited among Alaska Native people as one of the reasons why they do not trust researchers.

It’s also critical that funders and scientists know about tribal sovereignty and the inherent strengths of Alaska Native people. With the advocacy that has come before me as well as ongoing advocacy by other Indigenous scholars, I see changes happening at the National Institutes of Health (NIH). I was an inaugural member of the NIH Tribal Advisory Committee, which advocated for the formation of the Tribal Health Research Office that continues today within the Office of the Director. I’m also excited to see efforts like the Native American Research Centers for Health continue and expand. Also, the Native Collective Research Effort to Enhance Wellness (N CREW) is truly innovative in how it funds Native communities directly to conduct research with a lot of flexibility built in.

What has surprised you about the discoveries from your work and your experiences engaging with communities?
I continue to be surprised by community members who raise questions I did not anticipate. A good example is a project I lead involving gaining Alaska Native people’s perspectives about the process of banking biospecimens like blood, serum, and tissue for medical research. Community members expressed much curiosity about the types of people who worked in the biobank and their motivations for working there. They were also curious about whether specimens got freezer burned. These are just some of the questions that my team would not have considered on our own. Because we listened to questions from the community, we included this information in a pamphlet about a local biobank in Anchorage that held many specimens from Alaska Native people. Without engaging with the community, the pamphlet we developed would not have been nearly as responsive to the concerns of the community.

What inspired you to become a researcher in minority health and health disparities?
In graduate school in the early 1990s, I realized how the cultural values I was raised with were not reflected in much of Western psychology. For instance, in my culture, the collective community receives strong emphasis, but in Western psychology, there is a strong emphasis on the individual.

At one point, I searched for scientific articles specific to Alaska Native people and only found a few. One article written by an anthropologist described Alaska Native mothers as “not active,” inattentive, and disengaged, clearly implying that Alaska Native mothers are neglectful parents. However, the article failed to account for cultural differences. Many Alaska Native cultures believe strongly in non-interference, respecting the independence of others without excessive intervention. In addition, for the examples used in this article, it was clear that others in the village were nearby. In many Alaska Native cultures, other village members assume responsibility for watching children. What looked like “neglect” from an outsider’s perspective really reflected cultural differences in parenting.

So, my inspiration to become a researcher was to make sure research findings included Alaska Native people from a culturally relevant lens.

How do we encourage the next generation to advance community-engaged research?
Continued advocacy with funders is critical to making sure community-engaged research is prioritized and funded adequately. In writing grants with Indigenous early career scientists, their motivations, like mine, are to help improve health and to research the right way, where the community is involved in every step, including determining what should be studied. Truly doing community-engaged research takes more time and thus more resources, including funding, which should go directly to the community for their contributions and to help build their research capacity.

What do you envision as the future of minority health and health disparities research?
I hope that more and more minority health research will be conducted by members of those communities. Having more researchers from diverse backgrounds leads to a diversity of thoughts and great scientific innovation. In the community-engaged work I have done with Alaska Native communities, they clearly would like the research led by someone from their culture and someone who has a sense of responsibility for improving health through research.

Page published Nov. 26, 2024