Editor's note Feb. 10, 2021: After this report by LNP | LancasterOnline, UPMC said they submitted race data for 90% of the individuals they had administered vaccines to the state.
Incomplete COVID-19 racial and ethnic data may hinder health officials as they try to spot and react to inequities in vaccine distribution and education among Lancaster County’s minority communities, local leaders say.
On Friday, the state reported that 918,210 people received at least the first dose of the vaccines and of those 246,390 people had received both doses.
However, about 35% of race data for first doses and 41% of race data for second doses was listed as “unknown.” And about 40% of data for the ethnicity of those who have received first doses and 44% of those with second doses was also “unknown.”
Poor data quality can lead to distorted understandings about which communities are being impacted by the virus and who has access to the COVID-19 vaccines, said Dr. Usama Bilal, epidemiology and biostatistics professor at Drexel University.
According to the state, the data it can report is only as good as the information given by vaccine providers and laboratories, and missing data is difficult to retroactively collect.
The state required providers report demographic data through an order effective on Dec. 15, 2020, Barry Ciccocioppo, a state Department of Health spokesman, said. However, each vaccine provider has its own system of collecting and reporting data to the state — meaning, there is no standard form they are required to complete when administering a vaccine, instead reporting directly into a statewide system.
As vaccines become available for the general public, policymakers and leaders need the data to investigate why people aren’t receiving the vaccines in certain communities and utilize targeted outreach efforts, said Ismail Smith Wade-El, president of Lancaster City Council.
“And what we target them with matters,” he said. “I think how we approach communities that for whatever reason might be reluctant or hesitant about the vaccine needs to be deliberate and thoughtful.”
Asked for racial demographic breakdowns of people they vaccinated, Penn Medicine Lancaster General Health and WellSpan Health both said to ask the state health department. UPMC — one of the largest health systems in the state with 40 hospitals — said it did not have a demographic breakdown for doses its administered. The system does not collect the data.
“The data we submit includes first and last name, ZIP code, contact information, occupation (if relevant), birth date and gender, as well as the vaccination date, vaccine type, expiration date, vaccine administrator, clinic, dose, injection site and other information on the specific vaccine given,” Allison Hydzik, director or public relations at UPMC, said.
When asked for the racial breakdown by county, Ciccocioppo said, “the department does have the county and provider data that is reviewed and analyzed. However, it is not currently in a format to provide.”
The state will contact vaccine providers that are found to be “neglecting their reporting responsibility” because race and ethnicity demographic data is important, Ciccocioppo said.
A recurring issue
The state’s holes in demographic data, particularly when tracking race and ethnicity, are not limited to vaccine distribution — despite being almost a year into the pandemic, close to 40% of race data for COVID-19 cases and 70% for case ethnicity are still unknown.
Amid pressure to release demographic data in the spring due to reports of the disproportionate impact of COVID-19 on communities of color, the state health department added the racial breakdowns of cases and deaths in April.
Issues in the newly available data were immediately evident.
At first, 75% of case data listed race as “not reported,” a number that shrunk over the next month to closer to 60%. Racial demographic information for deaths also started off with close to 50% of the information missing, but after a sudden shift to relying solely on death certificates, almost all of the information became available.
A notice requiring physicians to fill out all parts of lab forms and pressure from a Health and Disparity Task Force, led by state Lt. Gov. John Fetterman, aided in decreasing the percentage of missing racial demographic data for positive COVID-19 cases at the time.
But now, the issue appears to have passed into the data collection of vaccine administration.
“The department is only able to provide the data that vaccine providers and labs report. This is a challenge across the country,” Ciccocioppo said.
‘No wonder we have issues with data collection’
Enforcing the collection of demographic data can be difficult because of the nature of the information being requested, Bilal said. Unlike asking someone for their age, getting race and other demographic data involves self-identification of socially constructed variables, he said.
Pennsylvania only has four race or ethnicity identifiers for vaccine data collection: African American, Asian, Hispanic, white. A fifth identifier is listed as other/multiple.
Added to the complication of self-identification is the fact that the state is receiving the data from thousands of providers, who may be reporting different levels of information.
“And now we are doing this in the context of health departments having had budget cuts over the last two decades. So what do we expect? And all of that in the middle of the worst pandemic we’ve seen in a century and without federal coordination,” Bilal said. “So you add up all of that, and it’s no wonder we have issues with data collection.”
Blanding Watson, president of the Lancaster NAACP, said it is very important to track the data on a consistent basis.
“By not tracking the data properly and consistently this could affect the process of distribution of the vaccine and education of the vaccine,” he wrote in an email. “(State data) shows that there is a very big problem with data collection and a serious disparity relevant to African Americans and other communities of color …”