The ongoing IG investigation underscores the CDC’s focus on collecting accurate data on race and ethnicity from Covid-19 as a way to better understand how the pandemic affects Americans. Communities of color suffered disproportionate mortality rates during the pandemic. More accurate counts can influence federal officials’ decisions to reallocate resources or direct outreach efforts.
The investigation also highlights the gap between data collection efforts by the federal government and state health agencies – a topic that for months has worried officials within the CDC and elsewhere in the government, including the White House, and in the wider space of public health, as We go. Accurate race and ethnicity data are crucial for documenting the number of victims of the pandemic – and ensuring that the government’s response is equitable, officials said.
“To some extent, the federal government cannot do much in the way it collects this type of data,” a senior government official who worked with Covid-19 data told POLITICO. “We have to rely on the states and the systems and platforms they use to collect. And you are also faced with the question of how to get more people to answer these types of questions when they come for a test or a photo. “
Collecting accurate and relatively complete data on race and ethnicity is an age-old public health problem. A 2016 study compared five different databases containing data on cancer patients diagnosed in two hospitals and found that the availability of race and ethnicity data varied widely – from 28.1 percent in a registry system to 99.9 percent. cent in another.
The reasons for these problems are complex. Data can be discarded as it is passed from providers to states. Some patients may not want to give doctors information about their race and ethnicity, and some doctors may not want to snoop or guess the patient’s history.
But collecting this data became more critical during a pandemic that disproportionately affected people of color. According to CDC data – which are the most complete of all, in 74 percent of cases, for mortality – black and Hispanic people are dying at rates that exceed their share of the population. Public health experts believe that such data, from cases to vaccines, are needed to find out which communities may need targeted interventions.
Constant attention to the problem of missing data has led to limited progress. At the beginning of the pandemic, data were missing in perhaps three quarters of coronavirus cases. This improved for approximately 50% of cases in the summer of 2020, but progress since then has been weak. The availability of race and ethnicity data for recipients of the vaccine has reached a similar level.
The HHS IG investigation is representative of a broader conversation around the agency’s data collection methods, officials said.
In recent months, senior officials working with data on vaccination, mortality and life expectancy, among other topics, have held a series of meetings on the need for the agency to modernize its systems. That focus has emerged within the agency over the past decade at various times, officials said, but when the Covid-19 pandemic hit, the gaps in the reports became more apparent.
Authorities said the inspector general’s office raised the idea of examining the issue of racial and ethnic data in December, when the country was facing an increase in Covid-19 cases before the federal government started distributing the vaccines.
Up to that point, the CDC had struggled to keep up with the number of cases, tests and deaths associated with Covid-19. At one point during a wave of new cases during the summer of 2020, the agency was several weeks behind in its death calculation because states were not reporting their counts to the federal government, according to a senior CDC official familiar with the situation. .
That situation continued in 2021. At the beginning of the new year, the CDC was five weeks late in updating its Covid-19 mortality records, said that senior CDC officer. During the Trump administration, HHS officials tried to convince the CDC to change the way it works with states in collecting data from Covid-19, saying it took too long and was often inaccurate.
The result was the HHS Protect data platform. Instead of hospitals sending their data through CDC, the HHS Protect system forced them to manually send their data to TeleTracking, a private contractor who received an offer from HHS to develop the HHS Protect system. CDC officials said they were excluded from the reporting process and therefore could not guarantee that the data was accurate.
The Government Accountability Office is also working on a report on CDC’s data collection methods. It is part of a broader view of the disparate and often confusing way the federal government tracks Covid-19 and its impact on Americans. The authorities told POLITICO that the report is likely to recommend that the CDC and HHS condense their work data on the pandemic.