Beyond awareness: Why the patient journey matters in cancer care

Achieving better cancer outcomes demands more than simply getting patients through a hospital door. It requires connecting the subsequent steps in the patient's journey. While raising awareness of cancer symptoms and encouraging early screening are important, they are not sufficient on their own. What occurs after a person decides to seek care requires equal consideration.

Consider a woman who notices an unusual change and visits a healthcare facility, only to encounter challenges once she moves forward. Unclear costs, transportation difficulties, confusing referral pathways, or uncertainty about next steps can all hinder the patient's progress. Awareness initiates the journey, but it does not guarantee completion.

Evidence from Ghana provides insight into this distinction. A study involving 243 women presenting with breast symptoms across eight hospitals followed their journey. While all 243 received a referral for biopsy, only 53 (21.1%) ultimately underwent the procedure. The study identified both participant-related factors, such as difficulties in securing appointments, understanding costs, and navigating transportation, and health-system-related barriers, like unclear referral pathways, that contributed to missed biopsies.

Among the 102 women with confirmed malignancy, 64% initiated treatment, while 37 did not. Notably, 19 cases were attributed to participant-related factors, 12 to health-system-related factors, and the remainder were not classified within those categories. The median time from initial presentation to biopsy results was 14 days, whereas it took an average of 76 days from first presentation to treatment initiation.

Patients experience a journey, not a system. Healthcare systems are structured around services and institutions, while patients perceive them as a series of decisions, appointments, referrals, costs, conversations, and uncertainties. If one connection in this journey is broken, the patient bears the consequences. Therefore, access to care must extend beyond merely the availability of services.

We must also consider whether patients can reach these services, comprehend what is required, afford associated costs, and successfully navigate to the next stage.

While many barriers to care stem from clinical encounters, some are outside these spaces. Factors like transportation, income, family responsibilities, work, geography, information, and social support can significantly impact whether a patient remains engaged in their care. The Ghana study revealed that fear of diagnostic and treatment costs affected 71% of women who faced barriers, while 51% cited transportation costs.

Despite these being social determinants rather than clinical diagnoses, they can dictate whether patients continue with their healthcare journey.

Patient navigation plays a crucial role in connecting patients through the healthcare system. A navigator assists patients in understanding subsequent steps, connecting with appropriate services, coordinating appointments and referrals, identifying barriers to continued care, and following up as needed. However, patient navigation is not a replacement for the expertise of physicians, nurses, social workers, or other healthcare professionals. Rather, it bridges the gaps between different aspects of the patient's journey.

The World Health Organisation recognises patient navigation as an evidence-based, personalised intervention that can help overcome barriers within complex cancer care systems, particularly where services are limited, fragmented, or influenced by socioeconomic factors. Benefits include improved screening, reduced delays in diagnosis, enhanced adherence to care, and an improved patient experience.

However, solutions must be tailored to the specific healthcare systems they are designed for. Importing models from other contexts without adapting them to local realities is not effective. Healthcare systems vary in resources, referral structures, financing arrangements, workforce composition, geography, and patient experiences. Therefore, a navigation model should be crafted around how patients actually move through the care process.

Breaking down cancer access into five connected stages provides a practical framework:

1. Awareness → Action: Does information lead people to seek appropriate care?

2. Action → Diagnosis: Once someone seeks care, can they reach the appropriate diagnostic service and complete necessary steps?

3. Diagnosis → Treatment: Once a diagnosis is established, does the patient receive timely treatment?

4. Treatment → Survivorship: After treatment, is the patient supported through the recovery and survivorship process?

5. Survivorship → Follow-up: Once a patient has survived, is there ongoing care and follow-up to ensure long-term health?

By examining these stages and addressing potential breakdown points, healthcare systems can better connect patients to the appropriate care at each juncture, ultimately improving cancer outcomes and patient experience.