This one, specifically, was born as a concern to fill the void of reliable and easy to understand information for the Latin American population with lupus. It grew as a plan of colleagues and developed as a program that included health professionals and patients. This has been the evolution of Let’s Talk About Lupus, one of the various communications and patient education programs that, through social networks, creates bridges and discovers windows that allow reliable information to be provided.
The communities and networks established on the Internet generate sociability and relationships among its members because the network makes it possible to go beyond physical limits, allowing people with similar interests to connect and establish a relationship (1).
In this case, the main motivation is to present this program to other rheumatologists and healthcare professionals that are involved in the care of lupus patients. “We shall inform what it is about and the impact it had, because we think it is a very valuable tool, it is important that the medical and scientific community recognizes that this type of tool can be useful for patient education and that it can eventually serve as a model for education of other patient groups, not necessarily lupus patients.”, says Cristina Drenkard, program leader and associate professor of medicine at Emory University.
Let's Talk about Lupus (with its brother program Falando de Lupus - in Portuguese) is a comprehensive online program aimed at educating the Latin American population living with this disease. “Facebook has been the main channel for providing educational resources on lupus in Spanish and Portuguese, but information is also disseminated through other social networks (YouTube, Instagram, Twitter) and on our websites (www.HablemosdeLupus.org and www.FalandodeLupus.org)”, she says.
“It was a learning process; how Latin American patients and their relatives get involved with social networks and how they accepted these educational resources.”.
In addition to this, the program was analyzed and published in the Journal of Clinical Rheumatology as an initiative that seeks to "fill the educational gaps of Latin Americans living with lupus"(2).
“Preparing this manuscript and submitting it for publication was a process of establishing objectives and defining a structure to convey how the program was developed and what impact it had on the audience. We used the data collected since the program was launched, which was part of its evaluation and sent it to a journal that has an important audience in rheumatology," Dr. Cristina says.
The results indicated that the most massive dissemination was through Facebook, with more than 20 million people reached and 80,000 followers after 3 months, between the Spanish and Portuguese pages. The publication says "Almost 90% of the followers were from Latin America. High engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese websites accumulated more than 62,000 page views and 71.7% of the viewers were from Latin America," (See chart).
Patient and stakeholder engagement is critical to providing and disseminating reliable lupus education. "Social networks can be used to educate and generate interactions between people affected by lupus and qualified healthcare professionals."
She adds that "social media-based health education has an extensive and scalable reach but is more demanding for the professional team than the website. However, Latin Americans are less likely to use the website as a primary source of education because they value social interactions when seeking information about lupus."
LET’S TALK ABOUT LUPUS IN FIGURES
Let’s Talk About Lupus
Likes on Facebook
Chart reference: Taken from reference 2
This data corresponds to Spanish-language social networks
HOW TO ACHIEVE IT
But to continue talking about this program, it is important to know how it was created and its evolution, which, considering the dynamics of the networks and their audience consumption, must be adapted to the current challenges.
In an interview published on the World Health Organization (WHO) website, Rajiv N. Rimal, associate professor in the department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health, notes that "the best way to characterize the role of social networks is that they have enormous potential in ways that bring people together, in ways that provide real-time assistance in times of need and to bridge geographic and temporal differences between people. In that sense, it has tremendous potential, and we are already seeing evidence of the positive ways in which social networks can be used to improve the health and state of humanity. But it comes with potential costs and dangers."(3)
The question then is how to turn social networks into a direct channel of information for patients and families? Words such as viralize, views, visits, impact, became key in this process that, although they did not belong to scientific and medical jargon at first, they managed to move from social networks to the education program.
"The disease is so complex, it is a whole process to be able to receive the information, digest and incorporate it. It is not something that with just one talk the patient will be fully informed or familiar with the different aspects that the disease can have", says the doctor, considering that there was a lack of information to reach people.
It was then that she contacted Dr. Bernardo Pons-Estel and other colleagues from the Latin American Group for the Study of Lupus (GLADEL) to prepare a proposal. "I was thinking of a website where information would be compiled for patients. I have a daughter, Maria Celeste, who is a social communicator, did a master's degree in marketing with Latin American populations and with experience in social networks, and when I told her about this idea, she suggested I start there, which is where people now look for more information," she recalls. The suggestion at that time, 2016, was to use Facebook, the channel with the highest penetration in the Latin American population.
LET’S TALK ABOUT LUPUS
In Latin America, she says, mestizos (a racial mix between Europeans and Amerindians) are at higher risk of developing lupus and are more likely to be younger at the time of disease onset. "In addition, they are at higher risk for lupus nephritis, cardiovascular disease and higher disease activity than whites with lupus. Biological, behavioral, and social factors may explain the ethnic disparities in lupus outcomes."
While delayed diagnosis and barriers to accessing care are known factors leading to poor outcomes in lupus, a growing amount of research suggests that health education also plays an important role.
"Patient and community education is critical to promoting effective self-management in people with chronic diseases, including lupus. Although physician visits are an opportunity to educate patients, physicians often face competing demands and do not have enough time to meet the information needs of their patients. As a result, the Internet has emerged as a widely used tool for seeking information about lupus and exchanging patients' experiences and knowledge with others," she explains.
In view of this, the WHO points out that until recently, the main model of communication was "one" authority for "many", i.e., a health institution, the ministry of health or a journalist communicating with the public. Social networks have changed the monologue to a dialogue, where anyone with access to ICT can be a content creator and communicator. Health professionals must ensure that the information is correct and accessible.
"The program was born out of the need to fill the information gap about lupus among Spanish- and Portuguese-speaking Latin Americans. Lupus is a chronic autoimmune disease characterized by heterogeneous phenotypes with symptoms ranging from mild to life-threatening," says Dr. Drenkard.
"We have made animated videos of three to five minutes that address different topics, which have been selected by consensus between GLADEL rheumatologists and patient leaders of lupus patient organizations to have different perspectives. That's how we determined the most important topics to develop."
A key strategy of this program was the involvement of a broad and committed network of Latin American stakeholders, including patients, rheumatology physicians and other healthcare professionals, patient organizations, and experts in communication, graphic design and literacy. All stakeholders have been involved in the development, dissemination and promotion of the content to the lupus community and the general public.
The doctor states that "Our audience grew extraordinarily in the first year since the launch and has continued to grow steadily through all of our online channels. The audiovisual materials, available in Spanish and Portuguese, are produced so that the audience can feel identified with the characters and situations created to educate on various topics, using easy-to-understand language and giving the audience the opportunity to comment. In this way we have created a dialogue between the members of the audience and a group of rheumatology physicians who respond to the doubts and concerns of the users"
GLADEL member rheumatologists gathered evidence-based information on topics selected by both physicians and lupus patients to create the main content. "We have a team of young rheumatologists, all GLADEL members, who respond in a general way (without making diagnosis or specific therapeutic recommendations) to audience questions," she says.
The Let's Talk Lupus audience, through their organic feedback and through an evaluative survey, has indicated to those who lead this program that they are learning, and that they are able to communicate better with their doctor and feel better equipped to manage their disease. "We believe that Let's Talk about Lupus and Falando de Lupus contribute to the empowerment of patients in our countries," she says.
"We have leveraged the broad Internet and social media accessibility of the Latin American population to offer reliable and culturally competent education to the huge Spanish- and Portuguese-speaking population living with lupus around the world. Latin American lupus patients and their loved ones prefer the combination of learning and social interactions offered by social networking channels over individual learning resources through a website. That is why we continue to primarily use Facebook and YouTube to educate our population about lupus," she says.
This program has provided several opportunities to create a safe community and engage in health dialogues between patients and healthcare professionals, which is an innovative educational model for other rheumatic conditions. "However, we hope to carry out an evaluation going forward to determine whether users have a more active role in their self-management activities, including shared decision making with their physicians."
In addition, further assessment is warranted to inform potential differences between people in urban and rural areas. "Taking advantage of these high-reach, low-cost platforms, we are now conducting quantitative and qualitative research to understand patients' understanding and belief of the disease, health care needs, and challenges in disease management by sociodemographic characteristics," she adds.
The WHO asks at this point what is the bottom line for the growth of social media and health communication? Her answer is: "Be strategic and choose wisely. Identify what needs to be said and why, to whom and when. Focus your efforts on the specific social media tools relevant to the audience and use them consistently. A series of neglected or poorly managed social media accounts damages credibility. It is critical that healthcare professionals use social media to engage in conversation, not just to "broadcast" information. The global social media community expects to be able to add value to the conversation, help correct rumors or misinformation, provide feedback, or offer personal expertise."(3)
TOPICS TO APPROACH
Talk about lupus to give visibility to the disease in society; advocate and support health policies in our countries to help patients manage the disease properly; educate both patients and their relatives as well as the medical community in general.
It is not a virtual consultation, to issue diagnoses or to follow up through networks. It is a communication channel that provides the necessary information, responds to concerns and generates community.
A three-step process was used to select the initial core topics. First, two Latin American rheumatologists with extensive experience in lupus management and patient education created a list of topics. Next, the list was distributed to six patients and caregivers who serve as lupus community leaders in Argentina, Bolivia, Chile, Colombia, El Salvador, and Mexico, and a PhD educator from a large Hispanic lupus population in Chicago.
The topics were independently ranked according to their relevance, and additional topics were suggested by patient participants. Twenty-five topics were selected and sorted into two categories: learning about lupus (information about the disease) and living with lupus (coping, self-management challenges, and strategies for overcoming those challenges). "Once the program was launched, we conducted periodic formative evaluations to determine the topics of interest emerging from the audience itself," she says.
She also tells us that "From there we developed different types of educational resources: 3-5 minute animated videos to educate on core topics by illustrating specific aspects of the disease through characters and scenarios; photo albums to reinforce the main points of previously published videos or explain in more detail a complex concept present in the videos; self-management tips videos focused on the challenges of living with lupus and self-management strategies; monthly live-streamed video chats with a lupus expert."
In addition to this, a closed Facebook group in Spanish was also created to respond to the audience's need for a safe space where members can share experiences and foster peer-to-peer support. The group, called Amigos de Hablemos de Lupus (Friends of Let’s Talk About Lupus), is managed by a patient leader, who monitors members' comments to ensure that group rules are followed.
"The biggest challenge has been to give continuity to the program with a low budget. However, the selfless collaboration of members of the GLADEL group and the patients themselves, as well as the support of the Pan American League of Rheumatology Associations (PANLAR), the International League of Rheumatology Associations (ILAR) and Glaxo Laboratories (GSK) have been key to sustaining the program," she says. (4)
“There is a lot of ignorance about the disease, not only by the general population, but also by many physicians. It is a complex disease that can affect multiple organs in different ways, mimicking other diseases. Most patients have never heard of lupus before being diagnosed, and it is very difficult to explain the complexity of the disease and its management."
In addition, because the disease often has periods of inflammatory flare-ups alternating with periods of inactivity or remission, "patients who are not educated about the course of the disease may abandon treatment or seek alternative treatments, with tremendously negative consequences". Patients must then learn to live with a difficult disease that is often disabling, and the family also finds it complex to understand the patient's physical and emotional situation.
On the other hand, she says, the greatest achievement has been to have reached millions of people in Latin America and the world (almost 20 million people reached by Facebook in the first 3 months of its launch), eager for information about lupus, demonstrating that people can be reached effectively through these communication channels. Since its launching, Let's Talk about Lupus has been an educational reference for patients, patients' families and the general population; and it is recommended by Spanish and Portuguese-speaking rheumatologists to their patients.
- Carlo V. Caballero-Uribe, Muhammad Asim Khan, Chapter 18 - Patient Education and Patient Service Organizations, Editor(s): Philip Mease, Muhammad Asim Khan, Axial Spondyloarthritis, Elsevier, 2019, Pages 281-286 ISBN 9780323568005, https://doi.org/10.1016/B978-0-323-56800-5.00018-7
- Drenkard, Cristina MD, PhD*; Fuentes-Silva, Yurilis MD†; Parente Costa Seguro, Luciana MD‡; Torres dos Reis-Neto, Edgard MD, PhD§; Ibañez, Soledad MD∥; Elera-Fitzcarrald, Claudia MD¶; Reategui-Sokolova, Cristina MD#; Linhares, Fernanda Athayde MD**; Bermúdez, Witjal MD††; Ferreyra-Garrot, Leandro MD‡‡; Acosta, Carlota MD§§; Caballero-Uribe, Carlo V. MD, PhD∥∥; Sato, Emilia Inoue MD, PhD§; Bonfa, Eloisa MD‡; Pons-Estel, Bernardo A. MD¶¶ Let's Talk About Lupus. Overview of an Innovative, High-Reach, Online Program to Fill the Education Gaps of Latin Americans Living With Lupus, JCR: Journal of Clinical Rheumatology: February 17, 2021 - Volume Publish Ahead of Print - Issue - doi: 10.1097/RHU.0000000000001728
- Bulletin of the World Health Organization 2009;87:566-566. doi: 10.2471/BLT.09.066712
- Hablemos de Lupus https://www.gladel.org/contenidos/2020/08/13/Editorial_2924.php