“Hablemos de Lupus does not address specific diagnosis or treatment recommendations,” Dr. Drenkard says. “Our responses provide general information about the topics raised and encourage participants to discuss their questions with their physicians.”
The information users obtain through Hablemos de Lupus is meant to complement what they get from their doctors. It doesn’t replace in-person meetings with fellow patients or doctor visits.
A multidisciplinary team of lupus experts and rheumatologists, lupus education groups, patients and caregivers work with the initiative, in addition to a social media specialist, a creative producer and a webpage specialist. The rheumatologists are members of the Latin American Group for the Study of Lupus (GLADEL), an organization of nearly 90 rheumatologists from 36 centers across nine Latin American countries.
Hablemos also posts monthly live videos featuring a lupus expert. One recent live video discussed lupus and the kidneys. Led by an Argentinean rheumatologist, that video reached a peak of roughly 500 live views. “After 48 hours, there were 21,000 video views, over 4,000 reactions, 560 comments and nearly 700 shares,” Dr. Drenkard says.
More Numbers
User numbers reveal the need for Hablemos de Lupus. After launching in early May 2017, Hablemos has amassed more than 50,000 Facebook followers, Dr. Drenkard says. People follow from every Latin American country, but most live in Mexico, Peru and Argentina. The page has also drawn followers from the U.S., Europe and Asia.
The initiative’s first YouTube video, “What Is Lupus?” (see below), recorded 3.3 million views in its first week and reached more than 14 million people within a month. “It’s a very clear sign this is something people want more information about,” Ms. Eberhardt says.
The average Facebook reader rating for Hablemos is currently 4.8 stars out of 5, compiled from roughly 300 reviews.
“Hablemos de Lupus is a low-cost, innovative model of health education and patient empowerment proven to be effective in reaching … a huge audience in a short time, which would be unrealistic through in-person meetings,” Dr. Drenkard says.
The Users
A diverse group of users across Latin America—from patients to their family members—connect and share their stories via Hablemos de Lupus. One example: Glenda Chávez of San Salvador, El Salvador. Ms. Chávez was diagnosed with lupus 10 years ago and has organized a group of roughly 70 people with lupus in her country around a Facebook page called Lupus El Salvador. Hablemos de Lupus and Ms. Chávez’ group help provide support and information in a country with very few rheumatologists and few resources to make lupus more understandable, Ms. Chávez says.