CDC Foundation's Death-Certificate Detectives Investigate Data Equity Issues

Along with the devastating human costs of the coronavirus crisis, the pandemic has also revealed some long-standing cracks in the U.S. public health system. One of those fissures has to do with data—or rather, the lack of standardization when it comes to collecting information on COVID-19 deaths, as well as race and ethnicity—important factors in both surveilling the path of the disease and ensuring equitable resources go to local communities. But a pair of public-health professionals assigned by the CDC Foundation to the Massachusetts Department of Public Health have begun vital work on the repair effort, identifying gaps and suggesting solutions.

Epidemiologists Taiba Zahir and Anirudh Shreedhar are recent recipients of Masters of Public Health (MPH) degrees who’re both deeply committed to making a difference on a global scale and also excited to be making an impact on health equity at a state level.

“Public health is personal to me,” says Zahir, who grew up in Massachusetts as the daughter of Pakistani immigrants and developed an interest in the subject as a youngster. Speaking at her commencement ceremony at George Washington University (where she received her masters’ degree and a standing ovation), Zahir is passionate about “being able to be an advocate for justice, while being a nerd for science, taking into consideration not only your biology, but your environment to improve health outcomes.”

Born and raised in Bangalore, India, Shreedhar’s environment also made an impression on him. “My background is as a family medicine physician. I got into air-pollution research related to tuberculosis and upper respiratory infections in children, and I presented at the United Nations Data for Climate Action conference. The results of that study brought up actionable recommendations that could help so many people in such important ways. That was my first taste of sort of pivoting from clinical medicine to what data could do in influencing policy.”

Anirudh Shreedhar, MPH

Taiba Zahir, MPH

Shreedhar graduated with his MPH just in time for the COVID-19 outbreak, which for many in public health reinforced the importance of solid data in tracking the virus, while revealing that some of the collection methods had become outdated. As Zahir says, “All the doctors, hospitals and funeral homes were reporting into the death-certificate system, but some were still using a paper process. The idea is to go to this fully electronic system and standardize everything.”

But the numbers you get out of the system are only as good as the raw data you feed into it— and the two scientists soon discovered an issue. Due to comorbidities, deaths at home and inconsistent COVID-19 tests that came back post-mortem, COVID-19 mortalities needed a quality review check. "We became part of a wider inter-department data-matching initiative, where we’re reconciling death records with lab records to better track the path of the pandemic,” explains Shreedhar.

As the pair delved deep into the records to improve death-certificate data, their research turned up a surprising trend. Despite race and ethnicity categories being included on the forms sent into the state, the granular level data submitted by funeral homes was sometimes missing or inaccurate. They soon identified a cause: “Funeral homes were focused on getting as many of their staff as possible to use the new digital system, but not much on what to do after they got there in terms of data quality and best practices,” says Shreedhar. “There had been no outreach to cover that aspect.”

“The first part of the project was to try to improve the medical information, the cause of death and contributing conditions,” says Karin Barrett, M.Ed., Registrar of the Massachusetts’ Registry of Vital Records and Statistics, who is well-aware of the importance of accurate and actionable data. “The other piece was to start to do some more data quality work on the demographic and social determinants of health. And race and ethnicity are important indicators for health disparities.”

We just want people to care about data quality, especially race and ethnicity, given the disproportionate impact COVID-19 has had on communities of color.

Zahir and Shreedhar came up with a strategy to encourage better reporting, which first involved reaching out to the funeral directors themselves. “We’re trying to find out what their typical experiences are in terms of interfacing with the bereaved relatives on race and ethnicity and trying to complete the circle of when you input the data, where it gets used, and why it matters in terms of allocating resources and understanding the impact of COVID-19 on different communities,” Shreedhar describes.

The duo then began to put together a detailed plan to produce educational material, including slide decks, a web page and a webinar, aimed at clarifying the process for understandably busy morticians and their staffs. A big win was getting the state Funeral Directors Association to agree to issue continuing education credits for taking the training.

As Shreedhar explains, “We’re going to draft some guidelines for funeral directors, including sample conversations with different communities, the type of verbiage to use and the kinds of phrases to more easily broach the topic with the decedents’ loved ones.” Zahir adds, “The number one most important thing is to have the family self-report their race and ethnicity. The best way to get accurate data is by simply asking.”

The outreach plan continues to develop, and Barrett says her department is “incredibly grateful that the CDC Foundation found two amazing epidemiologists for us.”

Zahir could not be more satisfied with the impact of her first post-graduate public-health position. “We just want people to care about data quality, especially race and ethnicity, as it’s coming to the forefront, given the disproportionate impact COVID-19 has had on communities of color. This primary data collection that funeral homes are doing will be affecting programs, affecting policies and affecting health outcomes for many years to come, long past COVID.”



This article is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $68,939,536 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS or the U.S. Government.

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