Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.

Objective: Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention.

Methods: We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers.

Evaluation of structured data from electronic health records to identify clinical classification criteria attributes for systemic lupus erythematosus.

Objective: Our objective was to develop algorithms to identify lupus clinical classification criteria attributes using structured data found in the electronic health record (EHR) and determine whether they could be used to describe a cohort of people with lupus and discriminate them from a defined healthy control cohort.

Methods: We created gold standard lupus and healthy patient cohorts that were fully adjudicated for the American College of Rheumatology (ACR), Systemic Lupus International Collaborating Clinics (SLICC) and European League Against Rheumatism/ACR (EULAR/ACR) classification criteria and had matched EHR data. We implemented rule-based algorithms using structured data within the EHR system for each attribute of the three classification criteria.

Assessing the Concordance of Clinical Classification Criteria for Lupus Between Electronic Health Records and a Physician Curated Registry.

We developed a computable phenotype for systemic lupus erythematosus (SLE) based on the Systemic Lupus International Collaborative Clinics clinical classification criteria set for SLE. We evaluated the phenotype over registry and EHR data for the same patient population to determine concordance of criteria detected in both datasets and to assess which types of structured data detected individual classification criteria. We identified a concordance of 68% between registry and EHR data relying solely on structured data.

Addressing Lupus Health Disparities: The MONARCAS Community and Academic Collaborative Program.

The Centers for Disease Control (CDC) Popular Opinion Leader (POL) model was implemented in a lupus education program (MONARCAS) for the Latino community. The program aim was to increase lupus awareness by training high school students, community health workers, and parents. A curriculum was developed training POLs to disseminate concepts about lupus signs and symptoms.

Disease Outcomes and Care Fragmentation Among Patients With Systemic Lupus Erythematosus.

Objective: To examine the impact of care fragmentation across multiple health care institutions on disease outcomes in patients with systemic lupus erythematosus (SLE).

Methods: Using the Chicago HealthLNK Data Repository, an assembly of electronic health records from 6 institutions, we identified patients with SLE, using International Classification of Diseases, Ninth Revision (ICD-9) codes, whose care was delivered at more than 1 organization. We examined whether patients had severe infections or comorbidities (ICD-9 code defined) that indicated SLE-induced damage.