Lack of Detailed Demographic Data Around COVID-19 Has Serious Impacts for Providers

by Carolyn Bick

Despite Washington State being the original epicenter of the novel coronavirus outbreak in the United States, the state has not released detailed demographic data around infections and deaths from COVID-19, lagging behind several states and counties throughout the country. King County released detailed demographic data around infections and deaths from COVID-19 on April 10, but the data is only from 51 percent of confirmed cases.

The King County data available shows that cases of the disease are highest among non-Hispanic Native Hawaiian or Pacific Islanders, but that deaths are highest among white people. This available data is not consistent with what other areas of the U.S. are reporting —— that Black communities are at a disproportionately higher risk of death from the disease —— or with what some local critical care providers are seeing on the frontlines.

However, because the data only represents a little more than half of King County's total confirmed cases — which stands at 4,053 cases as of April 10 — Public Health of Seattle and King County (PHSKC) officials warned that the current data limits conclusions and interpretations. The press release also warned that most confirmed deaths from COVID-19 were seen in long-term care facilities, the racial makeup of which may not reflect the general population.

This lack of detailed and comprehensive data has serious implications for critical service providers throughout the city, particularly in vulnerable and low-income communities, as hospitalization or a death in the family can mean an abrupt loss of income, food access, and housing stability.

The South Seattle-based Rainier Valley Food Bank (RVFB) is one such organization that needs accurate demographic data about COVID-19. Though they can make educated guesses, based on what they see on the ground, it's not as though they can easily collect their own data, said RVFB Agency Administrator Tara Migliore.

The organization doesn't ask people who are there to pick up food about their race and ethnicity, even in normal times, she said. That hasn't changed now, particularly when community need for food assistance has increased. Moreover, between ensuring people can safely pick up food at the food bank and delivering food to those who are homebound or unable to go out, food bank staffers and volunteers are already stretched to the limit.

Even though she and other RVFB staff and volunteers can offer anecdotes, based on their frontline experience, it still isn't the sort of accurate data potential funders rely on to make decisions. This hampers the food bank's ability to make their case to funding sources, particularly in these uncertain financial times. Migliore also worries that this lack of data will mean inequitable distribution of funds from the Washington Food Fund, which Gov. Jay Inslee unveiled on April 7.

"Right now, we have sort of a web of assumptions," Migliore said. "People want data, they want information, they want to know that decisions are being made off of facts. And that means observing and measuring."

The lack of demographic data around deaths and infections also affects International Community Health Services (ICHS), a health services provider in the Chinatown-International District that serves a diverse community. ICHS Infection Prevention and Control Administrator Lisa DiFedele said in an email that if the health center had COVID-19 death and infection demographic data, it could better tailor its outreach and interventions — messaging that's critical in a time of already low resources. But without that data?

"In the absence of timely and accurate epidemiological data, resources may be wasted and may not make it to those most in need," DiFedele said. "Certain groups are less likely to have health insurance, complicating their ability and willingness to seek treatment for illnesses including COVID-19. Because of this, certain groups may also have more difficulty getting tested for coronavirus or delay testing."

Despite the lack of data, DiFedele also wanted to assure people that they do not have to be patients at ICHS to take advantage of the health center's drive-through COVID-19 testing site. She also said that ICHS has taken steps to ensure that those who need the most care, such as elder community members or those with underlying health conditions, can continue to access their care providers through telehealth, phone appointments, remote WIC services, and pharmacy delivery services.

Neither the Washington State Department of Public Health nor Public Health of Seattle and King County responded to requests for comment.

Featured image: A person wearing a mask walks past the mural outside Franklin High School in Seattle, Washington, on March 29, 2020. (Photo: Carolyn Bick)

Carolyn Bick is a journalist and photographer based in South Seattle. You can reach them here.