Let's Talk About Lupus. Overview of an Innovative, High-Reach, Online Program to Fill the Education Gaps of Latin Americans Living With Lupus

Cristina Drenkard, Yurilis Fuentes-Silva, Luciana Parente Costa Seguro, Edgard Torres Dos Reis-Neto, Soledad Ibañez, Claudia Elera-Fitzcarrald, Cristina Reategui-Sokolova, Fernanda Athayde Linhares, Witjal Bermúdez, Leandro Ferreyra-Garrot, Carlota Acosta, Carlo V. Caballero-Uribe, Emilia Inoue Sato, Eloisa Bonfa, Bernardo A. Pons-Estel

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

BACKGROUND/OBJECTIVE: The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. METHODS: An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. RESULTS: The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. CONCLUSIONS: The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.

Original languageEnglish
Pages (from-to)e368-e374
JournalJournal of Clinical Rheumatology
Volume28
Issue number2
DOIs
StatePublished - 1 Mar 2022

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