2020 Census holds fate of trillions in health-related spending

The COVID-19 pandemic is making it tougher to count the population accurately because people are less willing or able to talk to census workers. But its impact on the census is uneven because the virus has affected different regions and populations differently over time. It’s easier to get people to respond to the census in person when there are fewer cases, or census workers are reaching out to populations less concerned about getting sick.

Some providers have taken it on themselves to help with the census. Arizona-based Mountain Park Health Center started reaching out to its patients before COVID-19 struck, partnering with a not-for-profit to educate patients about the census when they visited its clinics. The community health center continues to reach out to people through email and social media, but it had to pause in-person events promoting the census and its partnership with Phoenix’s mobile census vans that allowed people to fill out a census form on the spot.

It’s a familiar role for Mountain Park, which also registers people to vote and serves as an official polling place during elections, Mountain Park Director of Marketing and Engagement Janey Pearl Starks said in an email. The organization believes that one way to determine the health of a community is by its level of community engagement and the degree to which community members feel their voices are heard.

“It is important that those in the communities we serve are counted in the census. Both for the actual benefits of a community having an accurate count, but also for the simple yet important act of civic engagement,” she said.
Every person living in the United States, regardless of citizenship status, is required by law to be counted in the U.S. decennial census. The results will decide who wields political power, determine how much funding state governments and local communities receive from the federal government and inform a wide range of health-related policies and decisions.

Experts worry the COVID-19 pandemic and actions by the Trump administration might lead to a sizable undercount, which could put billions of taxpayer dollars at risk of being misspent, worsen public health and intensify health inequity.

“We can’t ensure a fair distribution of health-promoting resources if we’re using formulas built on the back of invalid, biased data,” said Philip Alberti, senior director of health equity research and policy for the Association of American Medical Colleges. “Making sure we get the census right is a preeminent concern for folks in public health and healthcare.”

The pandemic makes it harder to survey people living in institutional settings like nursing homes or prisons thanks to new restrictions. And the economic volatility caused by the pandemic makes it more likely that people will move, making it even harder for census workers to track people down.

While Americans can respond to the 2020 Census online, a first for the survey, the change could skew the results since older adults, people of color and the less well-off might be less likely to respond electronically than wealthier, white populations.

The Census Bureau may use statistical techniques to account for biased data samples, but the more inaccurate the data, the harder it is to do that well. It’s also controversial because the Constitution’s enumeration clause requires a real count of all “persons” in the nation.

“It would be without historical precedent,” said Doug Strane, health policy research program manager for PolicyLab at Children’s Hospital of Philadelphia.

The Census Bureau also collects more detailed data through its American Community Survey, which is sent to nearly 300,000 addresses each month to gather information about ancestry, citizenship, educational attainment, income, language, housing characteristics and other information. It’s by far the most comprehensive federal data collection on the social determinants of health, but an undercount would weaken experts’ ability to effectively use the information.

Providers, insurers, policymakers, researchers and others compare the results of the ACS to census data to measure progress. But it could be harder to do that if the census can’t supply a trustworthy baseline.

“I’m truly worried that our efforts to understand and address the structural determinants of health are potentially undercut by invalid census counts,” Alberti said. “If we get the population numbers wrong, our public health research and (the) evaluation of our results will become less reliable if we don’t know how we’re doing over time.”

Health systems and insurers could have trouble executing population health management strategies and performing well in risk-based contracts if social safety-net programs are underfunded due to inaccurate census information.

“Those population health efforts can only work if there are adequate federal resources coming down to the local level,” Strane said.

Hospitals and insurers need to consider how they will address their populations’ social determinants of health if the 2020 Census results in inadequate funding for critical programs during the coming decade, Strane and others said.

Census information could affect who wins the presidency in 2024 and which states gain or lose seats in the House of Representatives in 2022.

“After the 2020 Census, southern and western states are expected to gain seats—and political clout—at the expense of states in the Northeast and Midwest,” according to the non-profit Population Reference Bureau.

That could affect which political party controls Congress since state lawmakers draw congressional districts. A miscount in 2020 could shift “a handful of House seats from less-white to more-white states and districts,” according to an NEJM article.

Given the high stakes, the 2020 Census has drawn a lot of political interest.

The Trump administration tried and failed to add a citizenship question to the 2020 Census, despite concerns from communities of color that fewer people would be willing to participate in the census. A February survey from the nonpartisan Pew Research Center found that just 17% of adults knew the census doesn’t ask about citizenship.

Earlier this month, the Census Bureau that it would stop collecting census information September 30, even though it extended the deadline from August 15 to October 31 in April. At the time, the bureau said it was worried the pandemic would make it harder to collect accurate information.

The agency said it decided to end data collection early to meet its December 31 deadline to provide Congress with census figures. Experts say the Census Bureau is more likely to undercount people of color, immigrants, low-income people and other marginalized populations if it stops collecting data early because they’re harder to reach.

National Minority Quality Forum CEO Gary Puckrein said it’s a “tremendous disservice to society” when people “monkey around with (census) data for political purposes.”

The census gives public officials, researchers, providers, insurers, suppliers and other crucial data to prepare for and respond to pandemics, natural disasters and other emergencies. The information becomes more useful as it becomes more accurate, which has led the Census Bureau to refine how it conducts the census over time.

Part of the reason it’s difficult for public health experts to collect information about and understand how COVID-19 affects people of different races and ethnicities is that people have trouble identifying themselves through the census because of how the bureau collects information.

For example, the census asks people of Middle Eastern and North African descent to self-identify as white, according to an article in the American Journal of Public Health. The census also makes it tough for LatinX people to clearly describe themselves because it asks multiple related questions instead of one.

Even before the pandemic and recent moves by the Trump administration, there were representation issues with census data. Alberti said it created a “kind of vicious circle” because the Census Bureau consistently overcounts people with higher socioeconomic status and undercounts people with lower socioeconomic status.

“There’s a lot of blame, particularly on communities of color, for their ‘underlying comorbidities,'” he said. “The blame for them actually lies in the fact that we have (an unequal) distribution of resources across our communities.”

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