Knowledge about lupus is biased towards the severe end of the spectrum of the disease because of difficulty assembling population-based cohorts of persons with lupus. An urgent need to expand the basic epidemiologic understanding of cutaneous and systemic lupus in four content areas (i.e., natural history, treatment, health care access, and disparities) was identified by the Centers for Disease Control and Prevention. Our project addresses these needs using the unique research infrastructure of the Rochester Epidemiology Project (REP). The REP contains longitudinal data on residents of a 27-county region in Minnesota and Wisconsin. Nested within the medical record-linkage system of the REP, we have identified population-based cohorts of 583 persons with cutaneous lupus erythematosus (CLE) and 434 persons with systemic lupus erythematosus (SLE) matched by sex, age, race/ethnicity and county of residence to population-based referents without SLE or CLE. These cohorts comprise the Lupus Midwest Network (LUMEN). Through the infrastructure of the REP, LUMEN follows individuals regardless of insurance status and encompasses the full spectrum of care, from primary care clinics to tertiary specialty care, and maintains an electronic index of diagnoses and procedures from these records, including all inpatient and outpatient encounters, laboratory measures and drug prescription data. These resources coupled with a team of researchers and clinicians with decades of experience conducting population-based research provide an opportunity to leap forward in our understanding of the natural history, treatment, health care access, and disparities across the full spectrum of cutaneous and systemic lupus. Using the LUMEN population based cohorts, we aim to 1) characterize the patterns of comorbidities and their impact on outcomes among patients with SLE and CLE; 2) describe the prevalence, duration and dose of opioids in patients with SLE in general, by underlying comorbid pain conditions; 3) determine access to specialty care and preventive services in patients with SLE and CLE; and 4) examine how neighborhood socioeconomic deprivation through the area deprivation index, affects comorbidities, opioid use and access to care. We also will pilot an innovative, secure, mobile personal health platform (Hugo) that enables patients to access their information from multiple EHRs and other healthcare information sources, including pharmacy records and share it with the researchers. The Hugo platform has tremendous potential to facilitate clinical research in the registry setting. The successful use of Hugo will be proof-of-concept to apply it across multiple CDC lupus registries and transform how registry-based follow up and clinical research is conceptualized and conducted throughout the entire CDC lupus registries consortium.
The Lupus Midwest Network (LUMEN) will shed light on our understanding of how persons with systemic and cutaneous lupus accumulate multiple, interrelated chronic health conditions (multimorbidity) and how multimorbidity contributes to poor outcomes. Insights regarding opioid use in lupus and the healthcare access and gaps that persons with lupus experience will inform clinical guidelines for pain treatment in lupus and will lead to improvement in the quality of care (e.g., preventive screening and treatments). Project efforts will also explore the potential of a secure, mobile, personal health platform as an innovative registry follow up technology that can be applied across multiple lupus registries.