Patient navigation has been successfully implemented in numerous cancer programs in the United States and Canada, and the field of cancer navigation is growing every day. Although it has been largely unexplored and underutilized in low- and middle- income countries (LMICs), a dedicated team at the American Cancer Society (ACS), along with the support of a growing number of navigators and cancer providers, are now hoping to change that.
According to Erica Krisel, MPH, program manager, Global Capacity Development and Patient Support at the ACS, and Kirstie McComb, MPH, managing director, Global Capacity Development and Patient Support at the ACS, although patient navigation programs do share some universal themes, adapting the design of these programs to each country’s unique culture, population, and infrastructure is crucial to their successful implementation.
At the AONN+ 11th Annual Navigation & Survivorship Conference, Ms Krisel and Ms McComb discussed a new program at the ACS designed to address the hurdles inherent to building thriving navigation programs in LMICs. The program is based on the success of programs they have implemented or are currently building in Kenya and Uganda and is called the BEACON Initiative (Building Expertise, Advocacy, and Capacity for Oncology Navigation), a 5-year project funded through a grant from the Merck Foundation.
Rationale for Investing in Patient Support Capacity Development in LMICs
Patients with cancer in LMICs face many of the same barriers to care as patients in the United States, but to a greater degree, and often the health systems and organizations designed to support them are weaker or nonexistent.
“We’re finding that strategies and solutions to meet these needs already exist, but they have to be adapted and tailored to the local context, in collaboration with partners,” said Ms Krisel.
The ACS is now leveraging its 100+ years of experience and success in the United States and applying these best practices toward increasing global patient access to care and providing support to patients throughout their cancer journey.
The Global Burden of Cancer
Cancer is the second leading cause of death worldwide, but approximately 70% of deaths from cancer occur in LMICs. Globally, 1 in 6 deaths are from cancer, and annual cancer deaths greatly outnumber deaths from HIV/AIDS, tuberculosis, and malaria combined.
“While cancer continues to bring great suffering to Americans as the second leading cause of death in the US, death rates from cancer have decreased every year from 1999 to 2018,” Ms Krisel said. “So we are making great progress in the US, but that progress has not yet spread to the rest of the world, one reason being late-stage disease presentation and the inaccessibility of diagnosis and treatment options in LMICs.”
By 2040, the global cancer burden is expected to increase to 29.5 million new cases (up from about 18 million now) and 16.4 million deaths annually. But although cancer affects people in every country on Earth, it does not affect them equally.
“Higher-income countries have a greater incidence of cancer than lower-income countries, but if we look at the mortality rates, we see that LMICs carry a greater burden of death from cancer,” she explained. “So while there’s less cancer in LMICs, currently, the majority of people in these countries who develop cancer will die of it.”
According to the Global Cancer Observatory 2018 estimates of incidence and mortality, almost 3 of 4 of those who develop cancer in Kenya and Uganda die of their cancer, whereas in the United States, only 1 in 4 die of the disease. In the Philippines about 64% die of their cancer, and in Guatemala as well as Trinidad and Tobago, it’s about 57%.
“In less-resourced parts of the world, cancer doesn’t get the attention it deserves, nor the support needed to address it,” she said. “It can be overwhelming to think about what these data mean, and it’s easy to get discouraged knowing the burden so many people bear due to cancer.” However, she says navigators are working to change that.
According to Ms Krisel, she and her colleagues at the ACS are now working across the cancer continuum to promote “best buys” in prevention and early detection, to foster access to high-quality treatment, to adapt patient support initiatives (like patient navigation), and to build strong cancer organizations that will ensure that effective cancer policies are passed and crucial services are delivered to those who need them most.
Navigation Programs in Kenya and Uganda
Ms Krisel provided a brief overview of the patient navigation work implemented by ACS in Kenya and Uganda. Each country has 1 major public hospital that provides a comprehensive array of cancer care services and serves the majority of the country’s most vulnerable: Kenyatta National Hospital (KNH) and the Uganda Cancer Institute (UCI). Typically, each of these hospitals sees between 5000 and 6000 new patients a year.
“ACS started our global navigation work with patient needs studies at KNH in 2015 and at UCI in 2017,” she noted. “These studies informed a lot of our work and created an evidence base for the many needs we seek to address. The KNH program launched in June 2017, and we’ve been funding that program at almost 100% since it began.”
KNH now provides patient-centered care to patients with cancer (as well as their caregivers) from diagnosis through treatment completion. In the span of just 3 years, KNH has now navigated over 7000 newly diagnosed individuals with cancer.
With support from Merck, the KNH program has grown from 9 to 19 staff last year, and with the help of funding from ACS, the program was able to hire an in-country consultant who began supporting the design process of the patient navigation program, which launched at UCI in early March 2021.
Both KNH and UCI provide or will provide clinical navigation, which in the context of these countries means treatment education and support, lay navigation (including psychosocial and logistical or resource support), and physical navigation.
“Physical navigation was an innovation designed by KNH to meet the need to help patients with mobility issues, language, and literacy challenges to move through a large, complicated, and sprawling hospital complex,” she said.
The BEACON Initiative
According to Ms McComb, the rationale of the BEACON Initiative is based on the successful implementation of these programs in Kenya and Uganda and states the following: “Even if the magnitude of challenges in LMICs is greater than in the US, and other aspects of cancer care must also be addressed to improve outcomes, we believe that patient navigation has a relevant role to play that, to date, has been largely unexplored outside of the US and Canada.” The main goal of the initiative is to build and deliver a toolkit—informed by interviews conducted around the world—to help more health systems in LMICs to develop patient navigation programs that serve their local systems and populations.
She said that the overarching goals of the toolkit are to:
- Bridge the Global Gap (adapt learnings from the United States to other countries)
- Choose Your Own Adventure (BEACON is not promoting 1 certain type of program; be creative and adapt programs to each country)
- Facilitate Adaptation to Local Context
- Prepare users to Anticipate and Manage Change and Plan for and Achieve Sustainability
But when 70% to 80% of the population in LMICs is showing up with late-stage disease, when there might only be 1 radiotherapy machine in the country, can patient navigation really make a difference? According to Ms McComb, it can.
“You need to start somewhere, and we went ahead and got started,” she said. “The initiative is meant to build more global expertise in the area of patient navigation, and to increase advocacy for the power and the potential of patient navigation around the world that can be so critical to patients’ treatment journeys. It’s exciting to be doing this work because we get this opportunity—together—to define the value of patient navigation around the world.”
Ms Krisel ended by quoting a 39-year-old patient with breast cancer who was navigated at KNH: “When I learned that I had cancer, I was very scared. After meeting my navigator, Helen, I learned a lot more about cancer and felt encouraged to seek treatment. Helen served as an advisor throughout my difficult journey. Now I’m almost finished with treatment, and I am deeply grateful for all that the navigation team has done to help me.”
Moving forward, ACS will evaluate the navigation programs at KNH and UCI with the goal of documenting the experiences and lessons learned, as well as the ways in which these programs improved outcomes for patients and caregivers. These evaluations, she said, will provide examples of best practices for other countries considering similar projects.
“What we know is that patient navigation, by its design, is disruptive,” added Ms McComb. “It holds great promise, but in the process, it rubs against the status quo. So implementing change management therefore becomes as crucial as actually implementing your program.”