Dados do Trabalho

Title

Education page for lupus patients’ empowerment: a facebook experience

Background

Correct and useful information empower patients to become active members in their diseases’ treatment with possible improvement of different outcomes. Considering that social networks are currently important sources of information, its use as an instrument of health education is promising and relevant. The Social Media Project was created with the objective of providing useful and correct information about SLE, some comorbidities and general health to the patients and their families, using strategies that go beyond leaflets and folders.

Materials and methods

Undergraduate students of Medical School, aiming to know the lupus patients’ needs, asked patients to write down their doubts on an appropriate paper entitled "Everything that you always wanted to know about lupus and never had the courage to ask". On a second module of the Project, patients were asked to answer the question “What information about lupus you would like to find on the internet?". The patients’ doubts were answered, with the professors’ supervision, in texts with lay language and illustrations to be published on a specific Facebook® page, created on July/2018. Posts were divided into two sessions: "Health Tips" with information about the disease and some comorbidities, and "Learning More", where the doubts of the patients were answered.

Results

Since its publication on May 4th 2019, the page achieved 372 followers and reached 29,086 people. The majority of those users are women (69%), aged between 18 and 24 years (46%), mainly living in Brazil (85.6%). There were 33 posts, 15 in the "Health Tips" session and 15 in the "Learning More" session, besides two on the about tab and one about "World Lupus Day". The number of interactions in these posts totalized 4,902 users, considering reactions (likes-96%, Love, Wow, Haha, Sad), comments, sharings. There is also the possibility of interaction with patients through chat Facebook Messenger®, which has occurred in a low frequency up to now. Besides the trustworthy community for patients, the project provides important opportunities for medical students to interact with patients and to use this platform as a tool for health promotion.

Conclusions

We considered our results as significant so far and that the project contributes in a relevant way to meet the educational needs of people living with lupus. We believe that there is still room for the enhancement of the project, to increase the dissemination among our patients and for the expansion to other social networks.