Patients Shaping Better Cervical Cancer Care in Uganda: Empowerment and Choice Enabled by Rising Tide’s Research Co-Design Grant
November 2, 2026
Can patient partners help shape a clinical trial before the protocol is even finalized? In Uganda, they have ensured that a future cervical cancer screening and treatment trial is designed around the needs and realities of the women it aims to serve.
Funded by the Rising Tide Foundation for Clinical Cancer Research (RTFCCR) through a research co-design grant, the SmartVIA-UG project brings together Hera Medical Centre and patient partners from Cervical Cancer Care and Courage Uganda (CCCCU). The research co-design grant supports an early stage of research development, giving the team an opportunity to work with patients before finalizing the clinical trial protocol. This means that patient experiences and priorities can help shape the future study from the outset.
Designing the Trial with Patients from the Start
Following training and orientation, CCCCU patient partners joined four co-design meetings with the SmartVIA-UG technical team. The discussions, guided by the Hera Medical Center Research Ethics Committee, identified important considerations across screening, diagnosis, treatment, privacy, and follow-up.
Patient partners emphasized the need to reach women closer to where they live. Their input supported plans for community screening, integration with Health Center IV facilities, radio campaigns, and a call center, alongside culturally adapted approaches developed with survivor networks.
Protecting Choice and Reducing Barriers
Patient partners prioritized privacy and control over health information. Their input helped make HIV-status disclosure optional and ensured that patients decide whether their results are shared with relatives, supported by clear information about HIV and HPV.
Patient partners also highlighted practical barriers, including travel costs and physical discomfort. Proposed adaptations include same-day diagnosis and treatment, cost exemptions for refugees, and the use of disposable plastic speculums instead of metal ones.
Making Digital Technology More Transparent
Patient partners wanted to understand how the SmartVIA-UG application reaches a diagnosis, how accurate it is, and what happens to clinical images.
Their questions informed plans for plain-language explanations of artificial intelligence technology, Grad-CAM heatmaps to improve transparency, patient-controlled image storage, and additional educational information.
Building a Patient Community Beyond the Project
The impact of this early-stage work extends beyond the development of the future clinical trial protocol.
Following two months of advocacy training, more than 56 new CCCCU members were recruited from Kabarole and Fort Portal, far exceeding the initial target of 12. They joined an existing network of 200 members in the Luwero Triangle.
More than 80% of the members are cervical cancer survivors or patients. Through continued training, members are being equipped to raise awareness of cervical cancer risk factors and guide women toward appropriate screening and care.
From Patient Voice to a Patient-Informed Clinical Trial
SmartVIA-UG demonstrates the value of involving patients before a clinical trial protocol is finalized. Instead of asking patients to review an already-developed study, the co-design phase created an opportunity for patient partners to help shape key aspects of the future trial, including recruitment, screening, disclosure, treatment access, digital technology, privacy, and follow-up.
At the same time, the project is supporting the growth of CCCCU as a patient organization across central and Western Uganda, helping build a foundation for patient advocacy that can continue beyond the design phase.
The insights generated through the co-design process will now help inform the development of that protocol, bringing together scientific and clinical priorities with the experiences and needs of the communities the future study aims to serve.