Systemic lupus erythematosus (SLE, lupus) is a complex autoimmune disease with many different clinical presentations which makes prognosis and management of SLE challenging for primary care physicians caring for patients with lupus. Similarly to professional experiences, patients often disregard symptoms and signs of lupus, or discontinue treatment between acute episodes complicating the progress and devastating consequences of the disease. Latinos are more likely to be severely impacted by these disorders due to numerous well known economic, social, educational, cultural and institutional barriers that preclude their participation in health care. As a consequence of community awareness about the growing presence of symptoms suggestive of lupus in the Hispanic-Mexican community of Pilsen in Chicago, and the commitment to community-academic engagement by Northwestern University Feinberg School of Medicine, a partnership to address Lupus at patient, community and provider level was developed. The work of the grassroots, institutional and academic collaboration resulted in a culturally and linguistically relevant practice model, known as MONARCAS, that involves the recruitment and training of lay workers who inform, persuade and navigate potential patients to specialized clinical resources. Additionally, the model provides for increasing the data collection and assessment skills among participant lay workers, and enhances their leadership qualities to serve as key informants and become active participants in the local community public health planning process. The current application will engage trained lay workers in several public health lupus awareness and case-finding activities, closely engaging in the replication of the successful MONARCAS pilot model and fostering productive patient-provider encounters that improve chronic disease management, diminish the economic burden of care and improve quality of life among Latino/Hispanic lupus patients. Plans for expanding the model to other racial/ethnic groups locally and to Latino/Hispanic communities nationally are also included as part of the project.
|Effective start/end date||8/1/15 → 1/31/17|
- Office of Minority Health (1 CPIMP151087-01-00)