Best Practices for Cancer Care and Survivorship in Uganda: A Patient-Centred Roadmap to Improving Outcomes

Authors: John Vianney Amanya (UAPO), Dr. Annet Naguudi (UAPO), Ms. Gertrude Nakigudde (UWOCASO)

Huge thanks to Philippa Pristera, ISPEP Community Volunteer, for her support reviewing this article!

Introduction

Cancer is a growing public health challenge in Uganda, with an estimated 32,000 new cases and over 22,000 cancer-related deaths annually [1]. Late presentation, limited diagnostic capacity, fragmented care pathways, and inadequate psychosocial support continue to undermine patient outcomes.

Improving cancer outcomes requires coordinated action across prevention, diagnosis, treatment, survivorship, and palliative care. While Uganda faces persistent health system constraints, patient organisations have demonstrated practical, community-driven approaches that complement clinical services and improve patient experiences. 

Meaningful patient engagement, a core principle of the International Society for Patient Engagement Professionals (ISPEP), is essential to addressing these challenges. Patient organisations such as the Uganda Alliance of Patients' Organizations (UAPO) and the Uganda Women's Cancer Support Organisation (UWOCASO) have demonstrated how lived experience, community trust, and partnerships can strengthen cancer care. This article highlights best practices across the cancer care continuum, focusing on early detection, access to quality care, survivorship, and community partnerships, while drawing implementation lessons to inform policy and practice. The examples presented illustrate how meaningful patient engagement, survivor leadership, and collaboration with health institutions can strengthen cancer care and provide scalable models for wider adoption.

Early Detection and Diagnosis

Early diagnosis remains one of the most effective strategies for improving cancer survival. However, many Ugandan patients continue to present with advanced disease because of limited awareness, delayed care-seeking, and weak referral systems. Patient organisations have addressed these challenges through community education, patient navigation, and integrated community outreaches. UWOCASO's “Move for Her” campaign combines community fitness events with breast cancer awareness and screening, with its flagship community outreach programmes reaching 730 community members with cancer education and referral services [2]. Complementing these efforts, UWOCASO, in collaboration with the Uganda Cancer Institute and the Ministry of Health, trained Village Health Teams, cancer survivors, and frontline health workers as patient navigators to facilitate early referral and continuity of care [3]. Together, these initiatives have strengthened community awareness, referral pathways, and timely access to specialised cancer services.

Access to Quality Cancer Care

Access to quality cancer care remains inequitable, particularly outside major urban centres, owing to long travel distances, shortages of oncology specialists, financial barriers, and inconsistent access to essential medicines. Patient organisations have improved access by advocating for decentralised services, strengthening healthcare worker capacity, and promoting patient-centred referral systems. They also educate patients on treatment options, encourage adherence, and address psychosocial barriers that contribute to treatment interruption. These efforts complement investments in oncology workforce development, regional cancer services, and reliable access to essential cancer medicines, advancing more equitable cancer care across Uganda [4].

Palliative Care, Survivorship and Community Partnerships

Comprehensive cancer care extends beyond treatment to address the physical, emotional, and social needs of patients and their families. UWOCASO's “Mentally Cancer Free and Thriving” initiative enrolled 61 cancer patients (41 women, 20 men), providing survivor-led home visits, counselling, psychosocial support, and practical recovery guidance, while training 10 community champions and orienting 6 health workers to strengthen community support and referrals [5]. Partnerships with patient organisations, the Ministry of Health, the Uganda Cancer Institute, community health workers, researchers, media, and development partners have enhanced community trust, strengthened referral systems, and ensured services better reflect patients' lived experiences.

Implementation Lessons: What Enabled Success?

These initiatives highlight three key success factors: recognising patients and survivors as partners rather than beneficiaries, integrating patient organisations within existing health system structures and fostering multi-sectoral collaboration to mobilize expertise, resources, and community support. Together, these approaches strengthened programme relevance, community trust, and continuity of care. However, limited diagnostic capacity, shortages of specialised health professionals, financial hardship, stigma, and inequitable access to services continue to delay diagnosis and interrupt treatment. Sustained investment in patient organisations, stronger health system integration, and policies that institutionalise patient engagement are essential to improve cancer care across the continuum.

Conclusion and Recommendations to Stakeholders

The experiences presented demonstrate that patient-centred approaches can strengthen cancer care through community engagement, patient navigation, survivor leadership, and collaborative partnerships. These practical models have improved awareness, facilitated earlier diagnosis, enhanced psychosocial support, and strengthened continuity of care.

To build on these successes, key stakeholders should prioritise scaling proven patient navigation and community awareness programmes, strengthening decentralised cancer services, integrating psychosocial and survivorship care into national cancer strategies, investing in healthcare workforce development, and supporting patient organisations as equal partners in research, policy, and service delivery. Translating these successful community-based practices into routine health systems will improve equitable access to quality cancer care and enhance outcomes for people living with and beyond cancer.

Huge thanks to UAPO for delivering this article through the ISPEP Patient Organisation Bursary! This bursary provides free ISPEP membership to POs along with a dedicated platform for amplifying their messages and sharing best practices. Particular focus is given to POs from underserved communities or from regions where patient engagement voices are less often heard. To find out more, reach out via contact@ispephub.org.

References 

1. World Health Organization. Uganda: Cancer Country Profile 2022. Geneva: WHO; 2022.

2. Isabirye A. Move for Her: Promoting Breast Cancer Awareness through Community Engagement. Kampala: Uganda Women's Cancer Support Organisation; 2025.

3. Union for International Cancer Control. Improving Early Diagnosis in Uganda Through Training and Patient Navigation. Geneva: UICC; 2025.

4. World Health Organization. Guide to Cancer Early Diagnosis. Geneva: WHO; 2017.

5. Uganda Women's Cancer Support Organisation. Mentally Cancer Free and Thriving Programme. Kampala: UWOCASO; 2024.