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Implementation and dissemination of an African American popular opinion model to improve lupus awareness: an academic-community partnership

Author

Phillip CR1, Mancera-Cuevas K2, Leatherwood C1, Chmiel JS3, Erickson DL3, Freeman E4, Granville G5, Dollear M6, Walker K7, McNeil R8, Correia C2, Canessa P9, Ramsey-Goldman R2, Feldman CH1. Lupus. 2019 Oct;28(12):1441-1451. doi: 10.1177/0961203319878803. Epub 2019 Oct 8.

Author Information

1 Division of Rheumatology, Immunology & Allergy, Brigham and Women's Hospital and Harvard Medical School, Boston, MA.

2 Department of Medicine/Division of Rheumatology, Northwestern University, Feinberg School of Medicine, Chicago, IL.

3 Department of Preventive Medicine, Northwestern University, Feinberg School of Medicine, Chicago, IL.

4 Northeastern University, Boston, MA.

5 Women of Courage, Inc., Boston, MA.

6 Lupus Society of Illinois, Chicago, IL.

7 Lupus Society of Illinois Support Group, Hazel Crest, IL.

8 Lupus Society of Illinois, Trinity United Church of Christ Health Ministries, Chicago, IL.

9 Illinois Public Health Association, Springfield, IL.

Abstract

OBJECTIVE: 

Lupus is a chronic, autoimmune disease that disproportionately affects African Americans. We adapted the Centers for Disease Control and Prevention's Popular Opinion Leader model to implement an intervention tailored for African American individuals that leverages an academic-community partnership and community-based social networks to disseminate culturally appropriate lupus education.

METHODS: 

Academic rheumatologists, social scientists, and researchers in Boston, MA and Chicago, IL partnered with local lupussupport groups, community organizations, and churches in neighborhoods with higher proportions of African Americans to develop curriculum and recruit community leaders with and without lupus (Popular Opinion Leaders; POLs). POLs attended four training sessions focused on lupus education, strategies to educate others, and a review of research methods. POLs disseminated information through their social networks and recorded their impact, which was mapped using a geographic information system framework.

RESULTS: 

We trained 18 POLs in greater Boston and 19 in greater Chicago: 97% were African American, 97% were female; and the mean age was 57 years. Fifty-nine percent of Boston POLs and 68% of Chicago POLs had lupus. POLs at both sites engaged members of their social networks and communities in conversations about lupus, health disparities, and the importance of care. Boston POLs documented 97 encounters with 547 community members reached. Chicago POLs documented 124 encounters with 4083 community members reached.

CONCLUSIONS: 

An adapted, community-based POL model can be used to disseminate lupus education and increase awareness in African American communities. Further research is needed to determine the degree to which this may begin to reduce disparities in access to care and outcomes.