A recent study published in Arthritis Care & Research has found that missing data on socioeconomic, demographic, and clinical factors can exacerbate health disparities among children with childhood-onset systemic lupus erythematosus (cSLE). The research team analyzed data from the Childhood Arthritis and Rheumatology Research Alliance Registry and found that missing data were strongly correlated with socioeconomic, demographic, and clinical variables, highlighting significant data gaps that could misrepresent health inequities and influence the interpretation of cSLE research. Accurately evaluating missing data is crucial to addressing health disparities in cSLE.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect any organ in the body. Childhood-onset SLE (cSLE) occurs in children and adolescents under the age of 18 and is known to have a significant impact on health equity. Researchers have found that missing data on socioeconomic, demographic, and clinical factors can exacerbate existing disparities among cSLE patients, leading to inaccurate research conclusions and misrepresentations of certain population groups. This article summarizes a recent study published in Arthritis Care & Research that examined the relationship between missing data and health equity among children with lupus.
The research team analyzed data from 766 children in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry to assess the relationship between missing data and health equity for cSLE patients. The team evaluated 12 missing variables representing clinic factors, demographics, and socioeconomic position. The researchers found that patients in the study cohort were missing an average of 6.1% of data, and over 50% of the participants were missing at least one variable. The team also found that missing data were 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.
The findings of the study suggest that missing data can amplify existing health disparities in cSLE and influence the interpretation of cSLE research. This can result in misrepresentations of certain population groups and inaccurate conclusions. The researchers noted that health disparities in cSLE disproportionately affect patients from marginalized groups, and missing socioeconomic data can exacerbate these disparities. Therefore, it is crucial to evaluate missing data to 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. However, collecting and using that data effectively remains a challenge for many healthcare organizations. The American Health Information Management Association (AHIMA) shared a white paper in February that detailed how eight out of 10 surveyed healthcare organizations are collecting SDOH data. Still, barriers to data collection, coding, and use prevent the information from being utilized effectively to improve population health.
The 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 shared recommendations to address these issues in its white paper, but using health equity insights remains 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 data points from 59 datasets and 15 data sources, with data on COVID-19, tuberculosis, and HIV, among other diseases and health-related factors. Using this information, WHO hopes to identify and address patterns of health inequality worldwide.