In Venezuela, almost half of the women already have advanced cancer at first diagnosis, and it is reported that breast cancer patients often feel powerless given the barriers that exist in access to care in the country. With the current economic and political crisis, patients need to take an even more active approach to receive the necessary support, and access services. Reducing the gap in patient information by disseminating locally relevant materials empowers metastatic breast cancer (MBC) patients to make informed decisions and take action to receive the care and treatment they require.
The Venezuelan Breast Cancer Research and Education Foundation (Fundación Venezolana de Educación e Investigación contra el Cáncer de Mama-FUVEICAM) is a non-profit organisation focused on improving breast cancer outcomes through evidence based interventions appropriate for the Venezuelan health system and resource availability. With this new project, the Foundation sought to provide patients, caregivers and healthcare workers relevant information on MBC via the development of a new website.
Through their work, FUVEICAM has a strong knowledge of the gaps surrounding the information available to patients with MBC in Venezuela, particularly related to the stigma and social perceptions that exist around breast cancer and its diagnosis. In order to address this problem, the organisation set out to create an online platform to educate the population on a variety of topics surrounding MBC. It was awarded a SPARC award in October 2019 to launch an informational website with relevant materials on MBC, adapted to the local context.
The aim of the project “Reframing advanced breast cancer” was to design and develop online educational resources, that will brief doctors, patients and the public on advanced breast cancer, influence public policies and improve the continuum of care by supporting patients and their caregivers.
"Breast cancer care requires that patients have the education and support they need to make decisions and participate in their treatment. Empowering advanced breast cancer patients with the information they need in Spanish represents an enormous transformation in terms of diversity and cultural construction of survivorship."
The website materials are not only focused on MBC patients and their caregivers, but they also target health professionals. Sharing knowledge to decrease the information asymmetry between clinicians and patients is at the heart of the project. The main outcomes from this project are access to reliable health information about advanced breast cancer adapted to the local language (Spanish); support to patients, families, and caregivers in their treatment decisions; influencing public policies; improving the continuity of care; and strengthening the breast cancer workforce capacity.
This project included two main activities, first, to create resources that were previously lacking in the country context, namely resources on MBC available in Spanish, and second, to create an intuitive website where information could be easily accessed. A number of resources were created for this project including a comprehensive guide for “Guia Para El Cáncer de Mama Avanzado” (Guide for Advanced Breast Cancer), infographics, and briefings on specific topics.
By producing and disseminating adequate resources on treatment options, possible side effects and other relevant considerations, MBC patients can be more knowledgeable and confident in their choices. Materials and the latest news are shared with health care professionals contributing to improved performance of care. The website covers a range of topics from types of treatment to the emotional impact of diagnosis.
An additional element of this project is developing the organisation’s presence on social media to disseminate information to the community of patients and families. The organisation posts multiple times a week to provide and promote information on a wide range of topics from understanding advanced breast cancer to managing the physical and emotional struggles that come after diagnosis and treatment.
“This project's added value is comprised of the whole knowledge process (creation and translation). Advanced breast cancer patients and their caregivers receive information about their disease every single day as a social media post and through a specialised website. Hence cancer patients and health workers with this adaptive outlook will have appropriate tools for the decision-making process to improve the quality of care and outcomes.”
Maria Eugenia Aponte-Rueda, President of FUVEICAM
(Information from the project description and context is compiled from the final SPARC report)