“‘Uncounted’ and Long COVID”
Entry type: Single project
Country/area: United States
Publishing organisation: MuckRock, the USA TODAY network, the Arizona Center for Investigative Reporting, Willamette Week and the Texas Observer
Organisation size: Big
Publication date: 2022-12-14
Authors: Dillon Bergin, Betsy Ladyzhets, Karen Wang and Derek Kravitz of MuckRock and the Brown Institute for Media Innovation’s Documenting COVID-19 project at MuckRock; Shaena Montanari, Arizona Center for Investigative Reporting; and Rachel Monahan, Willamette Week, provided reporting. Multiple editors at USA TODAY, the Arizona Center for Investigative Reporting and Willamette Week provided editing.
MuckRock is a nonprofit, collaborative news platform that brings together journalists, researchers and the public to request, analyze and share primary source data and documents in the public interest. In addition to its services, training and support programs, MuckRock’s news team works on original editorial projects, including both collaborative and independent reporting efforts on issues of public importance.
“Uncounted” is MuckRock’s multi-newsroom investigation into thousands of potentially-missed COVID-19 deaths in partnership with USA TODAY and a host of local newsroom partners. This country’s system for tracking how people die has been chronically underfunded and inconsistent from state to state since long before the pandemic; COVID-19 has only led to more death certificate errors and faulty data.
We attempted to contact the listed next of kin in many of the deaths in Minnesota, and in speaking with three families, were able to find more details on how and why deaths were certified as either Long COVID or post-COVID.
What we found went beyond the CDC report on the 3,500 official Long COVID deaths, which was released in mid-December: the stories of several people for whom Long COVID contributed to death, context from experts who study the condition and recommendations for public agencies and research groups who will further tackle this topic.
Our story and data analysis resulted in a small change to the CDC’s tabulation of Long COVID deaths — a downward revision from upwards of 4,000 to 3,500.
But, more importantly, we also revealed new details about a National Institutes of Health-funded effort to study Long COVID through autopsies, which is part of the agency’s billion-dollar RECOVER initiative. The study had only enrolled about 85 patients — out of a planned 700 — as of mid-December, we found, due to challenges with collecting samples in the 24 hours after patients died. National registries and collaborations with patient groups could lead to more efficient research, experts told us.
The coverage was republished across the country, from The New York Times to Minnesota Public Radio and the Minneapolis Star-Tribune. And researchers are making use of the data in their own analyses of excess deaths to the virus.
In late 2022, we published two major stories in this project. The first explores how death certificate inaccuracies are more likely for Americans who are Black, Hispanic, Asian or Native — suggesting that the pandemic’s true toll on people of color is worse than previously known. We dug into mortality patterns in three communities that serve as examples for demographic disparity: Navajo and Apache counties in Arizona, Portland, Oregon and rural counties in Texas.
Our coverage was republished by our local partners in Arizona, Oregon and Texas, as well as other local publications.
Also in late 2022, the Centers for Disease Control and Prevention first attempted to tabulate how many Long COVID deaths have been recorded on death certificates over the past 2 ½ years. What they found: A little more than 3,500 out of 1 million official COVID-19 deaths. That 3,500 figure is likely a significant undercount, experts told us, for a public health crisis that has impacted almost 15% of all U.S. adults according to CDC estimates.
Building on our past expertise with death certificates, we replicated the CDC’s work with our own analysis in the states of New Mexico and Minnesota, California’s Bay Area, Los Angeles and San Diego, and Chicago’s Cook Cook County. We obtained detailed and exhaustive death certificate records from New Mexico and Minnesota through public records requests, allowing journalists to search for words associated with Long COVID. We also reviewed a more limited number of COVID-19-related deaths in California and Illinois counties.
Context about the project:
It’s not always easy to identify a COVID-19 death. If someone dies at home, if they have symptoms not typically associated with the disease or if they die when local health systems are overwhelmed, their death certificate might say “heart disease” or “natural causes” when COVID-19 is, in fact, at fault.
This problem is at the heart of “Uncounted,” MuckRock’s investigation into thousands of potentially-missed COVID-19 deaths in partnership with USA TODAY and a host of local newsroom partners. This country’s system for tracking how people die has been chronically underfunded and inconsistent from state to state since long before the pandemic; COVID-19 has only led to more death certificate errors and faulty data.
What can other journalists learn from this project?
There are a few easy programmatic lessons to take away.
In order to identify potential Long COVID deaths in the death data files, we programmatically searched through the text in the contributing and underlying “cause of death” fields for each death in all geographic locations. This script for this can be found in the notebook find_long_covid_key_terms.R. This regular expression was written to replicate the methodology described in the CDC report, “Identification of Deaths With Post-acute Sequelae of COVID-19 From Death Certificate Literal Text: United States, January 1,2020-June 30, 2022,” in which the CDC says that these terms were identified in consultation with subject matter experts and CDC clinical guidance.
We relied on words and phrases identified by the CDC’s National Center for Health Statistics to find cases where Long COVID caused or contributed to the death, including terms like “post COVID syndrome,” “post acute” COVID and “Long COVID.” In 2020, 2021, and parts of 2022, we found 62 deaths associated with Long COVID in Minnesota, nine in Santa Clara County and one in Los Angeles. In New Mexico, from 2020 through 2021, we identified 13 deaths.