Creating an online platform for MBC patients in Latin America
Context
In Latin America, many people with chronic diseases, especially women, have limited access to health care professionals’ advice as well as patient organisations to better their quality of life. This is often due to geographical, socio-economic, mobility or stigma issues. Reaching these people is sometimes costly and inefficient. According to ULACCAM, each year, approximatively 37,000 women in the region die from breast cancer. Fundación CIMA designed a project to create a virtual space for all metastatic breast cancer (MBC) patients in Mexico and other Spanish-speaking countries to access information about their condition, treatment options as well as emotional and psychological support through a webpage and other social media tools.
Thanks to a SPARC MBC Challenge grant in 2015, Fundación CIMA expanded its support to MBC patients by setting up an online platform offering reliable information and support to patients. Fundación CIMA is dedicated to raising awareness about breast cancer and empowering patients to exercise their breast health rights. In collaboration with COMESAMA (the Mexican coalition for breast health formed by 29 NGOs) and with ULACCAM (the Latin-American coalition against women cancers formed by ten countries and 19 NGOs) Fundación CIMA has launched the online platform “Tanto Por Hacer (“So Much to Do” in English), to reach MBC patients in Mexico and in Latin America.
Project description
Based on 17 years of experience working with breast cancer patients in Mexico, Fundación CIMA has been providing support groups for MBC patients. Through these support groups, they became aware of the need for online support specifically for MBC patients which could reach a wider group of patients across Latin America.
Through the SPARC grant, Fundación CIMA was able to create and launch the platform www.tantoporhacer.org, in which Spanish and Portuguese-speaking MBC patients, their families and caregivers in all Latin American countries and elsewhere, can find information and resources on health, palliative care, patients’ rights, nutrition and sexuality as well as patient testimonies, all of which can help them achieve a better quality of life.
To increase awareness about these resources amongst patients and their families, Fundación CIMA used major social media outlets such as Facebook and Twitter. Dedicated emotional support from psycho-oncologists was made available to MBC patients at first, via a chat room as well as in private sessions. After conducting an audit, thanks to a SPARC top-up grant, a new, more user-friendly website was developed and launched in 2020. On top of this, private Facebook groups substituted the chat rooms in hope of building a larger and more easily accessible community. In addition, Fundación CIMA conducted two webinars and started sending a bimonthly newsletter to keep the community up to date on research developments and other relevant information.
Impact
From September 2016 to December 2019, the page had 29,930 visits; 714 people are subscribed to our newsletter, and Tanto por Hacer has 10,332 followers on Facebook. The platform is reaching an underserved and often overlooked community of patients and providing them with information necessary for a better quality of life and, if the moment comes, a dignified passing. As one MBC patient voiced in gratitude, “Thank you! It is a wonderful tool to reach valuable information and solve any doubts that come up with the help of professionals.”
When first launched, Fundación CIMA produced three videos on topics such as: end of life living, will and testament; skin care and make-up for the MBC patient; video testimony of patients with MBC and their families with the purpose of generating awareness and empathy among the general public concerning their daily challenges. This video, "Tanto por hacer, Tanto por decir" (So much to do, So much to say) which has over 35,000 views so far, is an effort to empower patients to ask their governments for access to innovative treatment and join in a call to action to improve their quality of life.
After migrating the patient support sessions from the website to Facebook, the community has rapidly expanded, it had over 900,000 impressions and a reach of almost 700,000. There are also two closed groups, patients and caregivers, that are slowly but steadily growing. Fundación CIMA hopes that in the future, the Facebook live sessions (30 transmitted and posted until January 2020) will reach a wider audience. So far, the reach has exceeded initial expectations with over 31,000 views only in 2019. Going forward, Fundación CIMA’s plans for this project are to raise awareness about the benefits of participating in an online community. They also hope to facilitate a larger and better connected virtual community.
More
- Organisation's website: The Tanto por Hacer
- Video interview: "Cim*ab Fundación- SPARC MBC Challenge Grant Awardee"
- Informational videos: Tanto por Hacer Video Gallery
- Webpage: Tanto por Hacer- Nutrition
- Social media: Tanto por Hacer Facebook Page
(Information from the project description and context is compiled from the SPARC reports)
Last update
Friday 03 February 2023