You’ve just received news that could change your life. You need to get somewhere, fast! Not just any place, but somewhere unfamiliar, somewhere critical. The kind of place where every minute counts. You start your journey, heart racing, directions in hand, but the road ahead is unclear. The network drops, your map freezes and you no longer recognise any landmarks you were told about. Anxiety creeps in. You ask for help, and two strangers point in different directions. You choose one, hoping it’s right. It’s not. You hit a dead end. Frustration builds. Darkness falls, and with it comes exhaustion, fear and isolation. You wonder if you’ll ever get there. Then, a boda boda rider appears and you explain your destination. Without hesitation, they offer to guide you, and you follow. Finally! you arrive, safe, relieved, and grateful.

Now imagine that journey wasn’t to a physical place, but through the maze of diagnosis, treatment and a chance at survival. This is what navigating healthcare can feel like for many patients especially in systems that are complex, unfamiliar, and overwhelming.

From Ships to Healthcare: The Evolution of Navigation

Navigation was first used in English in the 1500s derived from the Latin word ‘navigatio’ referring to the act of moving on water in ships or other vessels. Since then, the concept behind navigation has grown to describe “the process or activity of accurately ascertaining one’s position and planning and following a route”. Centuries later, in the 1990s, this concept inspired a new approach in healthcare: patient navigation. It was first used to reduce barriers to breast cancer screening and follow up for vulnerable populations. This resulted in earlier detection of breast cancer, reduced late-stage diagnoses, and improved survival rates. What began as a localized effort has now evolved into a possible navigation model to improve patient outcomes across different diseases and contexts.

Lost in the System: Patient Voices from Kenya

In 2025, the African Population and Health Research Center reviewed preliminary findings from the Cancer Care Work Package study. These findings revealed that the majority of the delays in cancer care occur within the health care system. One of the reasons for those delays is patients not knowing where to go.

A patient referred for scans took nearly three months to go because they were not sure where the facility was and how to get there:

“M: When we check [the date you were referred] it was in March, and you went to Kijabe in May, what hindered you from going to Kijabe earlier?

R: I didn’t know where Kijabe was, and I had to ask around”

Male, 30 years old diagnosed with a head and neck cancer

Another patient was referred to a facility nearly 50 kms away in an unfamiliar area:

“When I [patient] gave him [healthcare provider] the results, he told me that I could not be treated there at Kerugoya. He would send me to Nyeri in Othaya, the Kenyatta branch. He called the ENT doctor there and told him about me, since I had told him I’m not familiar with Nyeri. I had never gone there. He called the ENT doctor there, and he told me to meet him in Karatina the following day”

Female, 57 years old diagnosed with a head and neck cancer

These are not isolated experiences, they reflect a broader structural gap in how health systems support patients through their care journey.

Where we Are: Gaps and Grassroots Efforts

Over the years, patient navigation has proven to be a powerful tool in improving patient experiences throughout the cancer care journey. It not only improves access to timely treatment but also overall quality of life and satisfaction with care. Yet, in many low- and middle-income countries (LMICs), patient navigation remains relatively new, underutilized, and often informal.

In Kenya, a notable step forward has been by the Cancer Treatment Centre at Kenyatta National Hospital (KNH) which partnered with the American Cancer Society (ACS) to implement a formal patient navigation program. However, beyond this initiative, there are no other documented formal navigation programs in the country. In the absence of structured systems, civil society organisations under the Kenya Network of Cancer Organisations (KENCO), have stepped in to fill the gap. Volunteers, often those with lived experiences and strong community connections, offer navigation support to patients. While these efforts are commendable, they are unsustainable and lack scalability, leaving many patients without the guidance they desperately need.

This October, as we mark Breast Cancer Awareness Month under the theme “Every Story is Unique, Every Journey Matters,” we are reminded that behind every diagnosis is a person navigating a deeply personal and often overwhelming path. Through the Cancer Care study at APHRC, we are taking a bold step forward by piloting a structured multi-level approach to patient navigation by combining facility and lay navigation. Our goal is to systematize navigation, making it an integral part of cancer care in Kenya, and ultimately improve patient outcomes, experiences, and dignity, because every story is unique and every journey matters.