Reframing advanced breast cancer: from expectations to facts

Context
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.
Project description

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.