Of worldwide cancer deaths, 70% occur in countries in the low- to middle-income brackets, according to panel members involved in the American Cancer Society Building Expertise, Advocacy, and Capacity for Oncology Navigation (BEACON) initiative. Recognizing the dire need for patient navigation for these populations, members of the BEACON team discussed the development and sustenance of such programs in low- and middle-income countries (LMICs).
“We are making great progress in the US, but that program has not spread to the rest of the world,” said Erica Krisel, MPH.
A 5-year project funded through a grant from the Merck Foundation, BEACON was borne of the rationale that although the magnitude of challenges in LMICs is greater than in the United States and other aspects of cancer care must be addressed, patient navigation—largely unexplored beyond the United States and Canada—has a significant role to play.
With an Advisory Committee whose membership represents 11 countries across 5 continents, including AONN+ members, BEACON is uniquely positioned to address the disparities between high-income countries and LMICs. Although countries with higher income have a greater overall incidence of cancer, their mortality rates are much lower in comparison with LMICs, which show smaller gaps between incidence and mortality.
Helping to combat the disparity is Kenyatta National Hospital (KNH) in Kenya, Africa, where, in 3 years, it has navigated more than 7000 newly diagnosed patients with cancer.
“It is exciting to be doing this work,” Kristie McComb, MPH, said of the opportunity to describe the role of patient navigation throughout the world.
Grace Omulogoli, former patient navigation team co-lead at KNH and American Cancer Society consultant, one of a diverse panel of navigation program leaders from around the world, discussed how the program has enhanced patient knowledge around diagnosis and treatment, as well as helped to ensure patients did not get lost trying to access services.
“This really has shown a great improvement in the experience of our patients in the hospital,” she said.
In Uganda, Africa, Uganda Cancer Institute is set to launch a navigation program in early 2021.
To assist in the establishment of such programs, the creation of a program development guide and implementation toolkit is underway. Seeking to bridge the global gap and facilitate adaptation of navigation programs to local contexts, the guide will prepare users to anticipate and manage change while planning for and achieving sustainability.
“We have also taken a ‘Choose Your Own Adventure’ approach,” Ms McComb said, adding that it was important to remember each country is different and not to impose an Americanized model on budding programs.
These goals will be accomplished with the toolkit’s outlining of phases for program development. In phase 1, program organizers will be invited to create their vision through gaining an understanding of patient navigation and the inner workings of cancer care within their individual health systems, as well as by identifying and engaging their support teams. Phase 2 will consist of the design stage, in which patient navigation will be customized to fit with individual health systems, preparations will be made for implementation and launching of the program, and efforts will be taken to expand the base of support for a program. Implementing and sustaining a navigation program will be the focus of phase 3, which will involve the start of implementation and learning what works; instituting processes and teaching others about them; and measuring progress and communicating successes.
Slated to be a self-guided, self-paced online resource, the toolkit will incorporate video and audio clips, anecdotes from various countries implementing patient navigation, and educational infographics. It will provide valuable support via questions and practical exercises, instructions, templates, worksheets, and curated examples of resources used by other patient navigation programs. Resources will be available for download, and the format of the toolkit will help keep users’ efforts organized and open for refinement over time. Interactive and fun, the toolkit will be bolstered by a Project ECHO® clinic, in which users can share and reflect on their experiences, encourage one another, exchange resources, and work together on problem-solving.
The toolkit is expected to be ready for widespread dissemination by 2022.
