SDOH Data Collection Update and Recommendations

How stark were the racial and ethnic minority disparities in Covid-19 diagnosis, treatment, hospitalizations, and deaths? The US will never know. The data needed for analysis wasn't collected. In July 2020, more than half of confirmed Covid-19 infections were missing race and ethnicity. Epidemiologists and public health officials pointed out that without this data, they couldn't fully understand how the virus was spreading, which communities were impacted the most, and where to focus prevention efforts and allocate federal resources.

A month later, federal laws were put in place requiring reporting of race, age, sex, and zip codes. Even so, race and ethnicity data were still missing from 34% of all Covid-19 diagnoses in 2022. Data collection varied from state to state. Three states, North Dakota, South Dakota, and West Virginia, failed to provide information on the race/ethnicity of their Covid-19 deaths. By comparison, just 1% of cases were missing data on age and sex.

Public health officials say this information is vital to fully understanding the extent of health inequities in the US. For example, in one study, researchers made conservative adjustments to the missing race/ethnicity data for Fulton County, Georgia. They report that increased the incidence of Covid-19 by 130% for Black people, 170% for Hispanic people, and 160% for Indigenous, Native Hawaiian, and Pacific Islanders.

Is race/ethnicity and other social determinants of health (SDOH) data collection improving? A survey published this month of more than 2600 health information data specialists found that most healthcare organizations now collect patient SDOH information. However, many challenges still prevent this information from being used to improve health outcomes for patients and their communities.

Researchers at NORC, an independent data analysis research institute at the University of Chicago, asked members of the American Health Information Management Association (AHIMA) 27 questions about data collection and coding. 71% said they collect information electronically. However, it's only sometimes useable due to a lack of training in capturing and coding the data, standardized measurements, and integrating the elements into patients' records.

The AHIMA made several recommendations which include:

1) The Centers for Medicare & Medicaid Services and other agencies within the US Department of Health and Human Services should work with stakeholders to establish a set of standardized, clinically valid SDOH data measurements for collection.

2) The government should consider providing financial incentives to healthcare providers, insurers, and commercial payers to collect SDOH information.

3) The government should help train workers to collect information using standardized methods.

The paper's authors point out that this would allow for sharing culturally sensitive best practice approaches, and stakeholders could share information on the availability of community programs and resources. Healthcare providers are only willing to ask about SDOH needs if they believe community-based services and support are available