Katelyn Banschbach, MD

Racial and ethnic minorities remain underrepresented in research despite similar willingness to participate. Incomplete race and ethnicity data can lead to exclusion in analysis and those missing this data are more likely to be Black or Hispanic, further worsening disparities. Research and secondary analytics done with incomplete race and ethnicity can unintentionally worsen disparities. Alternatively, missing data may obscure disparities which are already present. Ensuring high quality race and ethnicity data within the EHR and across linked systems, such as patient registries, allows identification of disparities and is necessary to achieve a goal of inclusion of racial and ethnic minorities in scientific research.

Missing race and ethnicity data was assessed and completed within Pediatric Rheumatology Care Outcomes Improvement Network (PR-COIN). The project consists of 4 Aims: (1) Identifying baseline missing race and ethnicity data, (2) Understand current race and ethnicity collection practices and entry into the registry at each center via a REDCap survey, (3) Data completion through three audit and feedback cycles where reports of patients with missing data are sent to each center with request for manual completion via EHR data, (4) Impact assessment on outcome measures via comparison of racial and ethnic differences in risk of certain outcome measures such as elevated clinical juvenile arthritis disease activity score (cJADAS) which are compared pre and post data completion.

The PR-COIN database contains over 5,000 active patients with juvenile idiopathic arthritis spanning 50,000 encounters with plans to add more pediatric rheumatologic diseases over time. Completing missing race and ethnicity data will help avoid unintentionally building inequitable algorithms and system frameworks. We describe the process of identifying and completing missing race and ethnicity data at six centers within the PR-COIN network and highlight the impact of completed data on outcome assessments.