Instituto Oncoguia Brazil

Peer support network for metastatic breast cancer patients in Brazil

Themes: 
Information and support gap

Context

In 2018, breast cancer accounted for 15% of new cancer cases in Brazil, and was the most commonly diagnosed cancer.[1]The same year, breast cancer in Brazil ranked second only to lung cancer in mortality, all ages and sexes.[2] While resources are available for early detection of breast cancer, there is a lack of information and support for those with metastatic breast cancer (MBC) in Brazil. In addition, there remains significant stigma and misinformation about cancer in general. Instituto Oncoguiadesigned a project aimed at empowering women living with MBC by offering them peer support through the Plus Life Network. 

Oncoguia Team

Instituto Oncoguia is a non-profit organisation that is widely recognised as a champion for cancer patients in Brazil and was created to combat stigma and false information about cancer. Since 2003, Instituto Oncoguia has developed a reputation within the cancer community as an organisation that shares quality information, provides patient support services, advocates for and offers a voice to patients so that they can live longer and have better quality lives. As such, Instituto Oncoguia had a unique opportunity to reach MBC patients throughout the country.

Quote image Instituto Oncoguia

“The SPARC grant has allowed us to develop an inspiring network of metastatic breast cancer patients who not only support each other but help combat stigma and misinformation about cancer that is so prevalent in Brazil. The Plus Life Network is stronger than ever and we would not have had the opportunity to create this group without the support from the SPARC grant.”  

Luciana Holtz de Camargo Barros

Project description

In 2015, Instituto Oncoguia was awarded a SPARC MBC Challenge grant in order to launch a peer-to-peer network throughout Brazil and to use it to disseminate quality information. By August 2016, they launched the Plus Life Network. Within the first year, 19 patient volunteers, known as Plus Life Agents, were trained and supported by Instituto Oncoguia. Their role was to reach out to other MBC patients all over the country, support them by identifying issues related to access to treatment, patient rights and quality of life, and to share information with them.

They also developed specific communication and education materials to support MBC patients through their patient journey, as well as a  dedicated MBC webpage within the Oncoguia Portal that is continuously updated with new information and materials.  

Impact

Oncoguia_Project_Image_App_Interface.PNG

Since its launch in 2016, the network has grown to include 26 Plus Life Agents and 792 patients throughout Brazil. Published educational materials include the "Metastatic Breast Cancer Handbook: My journey companion", with special content and exclusive tips for patients, and “Breast Cancer: Knowing Details of my Diagnosis” a tool used to assist doctors and patients in discussing diagnosis and treatment. Through Instituto Oncoguia’s close work with the Plus Life Network, an additional guide with detailed information about MBC was recently created for patients to address challenges faced after diagnosis.

The Plus Life Network also created the “Metastatic Breast Cancer Priority Charter,” which is an advocacy document that highlights the priorities  of MBC patients and is hosted on the Oncoguia Portal. 

In 2018, a research study was conducted to better understand the challenges faced by MBC patientsin Brazil. This study revealed that more than 35% of women first diagnosed with breast cancer already had advanced breast cancer, and that the median age to receive a MBC diagnosis in Brazil is 40 years old.

Then, in 2019, Instituto Oncoguia launched a series of six online classes for the Plus Life Network that included themes such as empowerment, mental health, and other quality of life issues specifically designed for mBC patients. Instituto Oncoguia continues to develop and expand the Plus Life Network throughout the country to foster a close-knit community among patients with the same diagnosis and empower them to advocate for the best possible quality of life for themselves. 

More

Organisation’s website: Instituto Oncoguia's website

MBC section on the organisation's website: MBC information for patients on Instituto Oncuguia's website (in Portuguese)

Manual: Guide with detailed information for MBC patients(in Portuguese)

Advocacy document: MBC Priority Charter(in Portuguese) 

UICC article: Meet with SPARC project leader Luciana Holtz

News article: More than 35% breast cancer patients discover advanced breast cancer, published in R7 journal (in Portuguese)

References

[1] GLOBOCAN, 2018

[2] Ibid

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

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Last update: 
Tuesday 17 March 2020
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