Increasing access to information for metastatic breast cancer patients in Colombia

Context

In Colombia, breast cancer is the most common type of cancer, comprising over 10% of all new cancer cases; it also has the third highest mortality.[1] Furthermore, in Latin America, 30%-40% of breast cancer cases are metastatic and this has been linked to both late stage diagnosis and poor access to treatment.[2] One essential solution to these issues begins with information. The Colombian population, and broader Spanish-speaking population, needs access to relevant, high-quality information. Instituto para la Evaluación de la Calidad y Atención en Salud (IECAS) designed a project to identify barriers faced by breast cancer patients in Colombia and, especially those experienced by metastatic breast cancer (MBC) patients, their families, and caregivers, when trying to access health information about their diagnosis.

Project description

In 2015, IECAS was awarded a SPARC MBC Challenge grant to create and launch a website for breast cancer patients in Colombia, including tailoring this to the specific needs of those with metastatic disease. They collaborated with Apoyo a Mujeres con Enfermedades del Seno (AMESE), a non-profit organisation whose mission is to share information about breast cancer and support patients and their families, and Instituto Nacional de Cancerología (INC) [National Cancer Institute], a governmental institution working in areas such as patient care, research, training and public health . AMESE and INC provided access to their patient databases for participant recruitment and provided clinical expertise on the website content.

 

The first phase of the project focused on research to identify three key aspects: barriers faced by MBC patients, families, and caregivers when trying to access health information; these groups’ specific information needs; and the appropriate multimedia format to deliver this information. The study included a literature review, a survey and six focus groups. Delays were encountered as the original data from four focus groups were considered to not sufficiently answer the research questions. As a result, two more focus groups were organised and held.

Based on the results of the study, the second phase of the project involved the creation of web content. This content was edited and approved by medical professionals and experts from the field of informatics in health and visual arts.

In Spring 2018, IECAS published their website for women with metastatic breast cancer “Cancer Mama y Vida” (Breast cancer and life). Unfortunately, shortly after the launch and for reasons independent to the project, the organisation has closed.

More

• Video interview: "IECAS- SPARC MBC Challenge Grant Awardee", with Carlos Andres Garcia Garcia, Director of Projects at IECAS 
• Social media: IECAS’ Facebook page

References

(Information from the project description and context is compiled from the SPARC reports)