In the United States, navigation is now an established part of the healthcare system. But in other countries it is still a brand-new concept, according to Nancy Peña, OPN-CG, Founder and Director of Navegación de Pacientes Internacional (NPI) in Guatemala and oncology navigator at Dana-Farber/Brigham and Women’s Cancer Center.
In the United States, public and private grants, philanthropic donations, and hospital funds are all available to burgeoning cancer navigation programs. Navigators are trained and paid to support patients, and they track their outcomes to demonstrate a measurable impact.
But in countries like Guatemala, the awareness of and support for navigation is nearly nonexistent. “In Guatemala, we don’t have access to public grants or private donations to train and pay navigators,” she said at the AONN+ 10th Annual Navigation & Survivorship Conference. “Navigation training in Spanish is very limited, and there is a lack of research and accurate data collection to support the impact of navigation.”
But Ms Peña, along with a small group of ambitious and dedicated volunteer navigators, are on a mission to change that.
Health Challenges in Guatemala
Located in Central America and bordered by Mexico, Honduras, El Salvador, and Belize, Guatemala has a diverse, multiethnic, and multilingual population of 17 million and is slightly smaller than Tennessee.
Guatemala’s health system is the least efficient in Latin America, according to a report by the Inter-American Development Bank, and according to the Guatemalan Social Studies Research Association, the country invests the least into education of all Central American countries (2.9% GDP). This problem affects the population greatly in terms of accessing jobs, education, and healthcare.
In 2014, the country had 7.5 physicians per 10,000 people (and only 1.5 physicians per 10,000 in rural areas). Early screening and prevention are limited, particularly in rural areas, and average cancer mortality is about 20,000 cases per year. The most common cancers are stomach, liver, breast, cervical, and prostate, and 41% of the population does not have health insurance.
Although Spanish is the official language of Guatemala, a number of Mayan and other indigenous languages are commonly spoken, so addressing the language barrier is yet another common hurdle for health providers (who are most often Spanish-speaking). Similar to some pockets of the United States, children are often expected to translate for their parents.
But according to Ms Peña, one of the biggest challenges faced by low-income patients with cancer in Guatemala is the lack of immediate access to radiation treatment. Patients often have to wait 6 months or more to receive radiation, and she says her volunteer navigators spend a majority of their time suing the Guatemalan National Cancer Institute for failing to provide radiation on time and for charging up to $1000 for each radiation treatment, even when it is required to provide subsidized “free” treatments to qualifying individuals.
Establishing Patient Navigation in Guatemala
But members of NPI are dedicated to tackling these hurdles and training navigators in Spanish in Guatemala and are now proposing implementation of patient navigation in one of the largest public hospitals in Guatemala City.
NPI began as a grassroots initiative, started by 6 cancer survivors who were supporting patients. “In 2015, I met these survivors and patients who told me about the barriers and challenges they have in accessing cancer treatment, especially radiation,” she said. “I explained to them about my role in navigation here in the US, and they were interested in learning how to modify that role to Guatemala.”
In 2016, she introduced the first patient navigation training program in Spanish and trained 30 participants in Guatemala. In 2017, they had 5 trained volunteer patient navigators, all cancer survivors. In that first year, Ms Peña supported the new navigators via Facebook and e-mail, providing them with advice and guidance, and pointing them in the direction of resources when they needed it (particularly in regard to suing the state). “This was a big challenge and gave me mixed feelings, especially because my family is in Guatemala,” she said. “I work here in the US as a navigator, and I see all of the resources we have, and sometimes we take those things for granted.”
Participants in the course were given a basic tool kit for patient navigation and were introduced to data collection materials adapted from The George Washington University Guide for Patient Navigators. Together, they identified barriers to implementation, not just in public hospitals, but also those faced by other nonprofits interested in setting up navigation programs of their own.
By 2018, the patient navigation training program was expanded to physicians, public hospitals, and stakeholders, and in 2019, the nonprofit NPI was officially formed.
To date, their 5 volunteer navigators have helped over 300 low-income patients to access cancer treatment. These navigators empower patients to fight for healthcare access and rely on word-of-mouth referrals. “Now we have stakeholders who are interested in implementing this pilot project in public hospitals,” she said.
She says their navigators are still facing challenges in regard to finances, lack of space, data collection (encouraging navigators to track data to demonstrate their impact), volunteer hours, and overall resources.
“Data collection is not part of our culture,” she said. “But we’re working on it.”
And one of their biggest challenges remains “constantly” being required to sue the hospital system for treatment access.
The program currently remains a grassroots effort due to lack of remuneration, but according to Ms Peña, efforts are being made to change that. Their next steps will include registering the nonprofit NPI, securing funds to sustain the organization, training more Spanish-speaking nonclinical and nurse navigators in Guatemala (the next training is scheduled for May 2020), establishing a patient navigation program in a public hospital, and continuing to provide health education on cancer prevention to patients.
Despite the many hurdles, the program has made a significant impact on the lives of patients in need. Ms Peña noted a few patient testimonials that praised the work of the navigators, thanking them for fighting for their access to treatment when no one else would, providing emotional support and education, and helping them to feel less alone in their fight against cancer.