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Missing Data May Contribute to Health Disparities in Children with Lupus
Missing clinical, demographic, and socioeconomic data may negatively impact health equity for children with lupus, a new study finds.
Researchers have found that missing data on socioeconomic, demographic, and clinical factors may negatively impact health equity for pediatric patients with childhood-onset systemic lupus erythematosus (cSLE).
The findings were described in a recent study published in Arthritis Care & Research, in which researchers sought to examine the relationship between missing data and health inequities among children with lupus.
The researchers noted that health disparities in cSLE disproportionally affect patients from marginalized groups, and that missing socioeconomic data can amplify existing disparities by supporting conclusions and inferences that misrepresent certain population groups.
To assess the relationship between missing data and health equity for cSLE patients, the research team analyzed data from 766 children in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. The researchers then evaluated 12 missing variables representing clinic factors, demographics, and socioeconomic position.
The researchers found that on average, patients within the study cohort were missing 6.1 percent of data, and over 50 percent of study participants were missing at least one variable.
Missing data was strongly correlated with socioeconomic, demographic, and clinical variables. For example, the association with missing data was higher for government-assisted health insurance than private health insurance.
These findings highlight significant data gaps that could misrepresent health inequities and influence the interpretation of cSLE research, the study authors concluded. To combat this, they suggested intentional evaluations of missing data to help better inform research interpretations and accurately present health inequities so that they can be addressed.
Information on social determinants of health (SDOH) can help researchers and clinicians gain additional insights into diseases and health outcomes across populations, but collecting and using that data effectively remains a challenge for many healthcare organizations.
In February, the American Health Information Management Association (AHIMA) shared a white paper detailing how eight out of 10 surveyed healthcare organizations are collecting SDOH data, but barriers to data collection, coding, and use prevent the information from being utilized effectively to improve population health.
A lack of standardization and integration of SDOH data into EMRs, insufficient training around how to capture, code, and use the data, and limited use of SDOH to support communication between community-based referral organizations and healthcare providers were major pain points for most organizations surveyed.
AHIMA shares recommendations to address these issues in its white paper, but using health equity insights is a global challenge.
In April, the World Health Organization (WHO) released its Health Inequality Data Repository (HIDR), which is designed to help track health disparities and advance population health.
The repository includes just under 11 million datapoints from 59 datasets and 15 data sources, with data on COVID-19, tuberculosis, and HIV, among other disease and health-related factors. Using this information, WHO hopes to identify and address patterns of health inequality worldwide.
