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Integrating patient and public involvement to strengthen oncology research in sub-Saharan Africa

bmjonc · 2026-04-29 · canonical JSON source

7 visible annotations · policy: published · automated confidence ≥ 75.00%

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Cancer mortality continues to rise in sub-Saharan Africa (SSA), with an expected increase from 520 348 in 2020 to approximately 1 million deaths by 2030.1 While there have been recent efforts to improve patient outcomes through oncology research in SSA, there remain several challenges that hinder progress. Africa accounts for only 1.1% of global clinical trials. In SSA, the majority of clinical trials are conducted in South Africa, with few trials in Nigeria, Kenya and Ethiopia.2 3 Most oncology research in SSA centres around virally induced cancers such as cervical cancer and Kaposi sarcoma, but there are significant discrepancies between incidence/mortality rates and research projects on several types of cancers, including breast, prostate and bladder cancers.4 Given the current challenges in oncology research in SSA, incorporating patient and public involvement (PPI) has the potential to strengthen oncology research by increasing the velocity of research, ensuring relevance, equity and overall impact.PPI is a collaborative process between researchers, patients and the public, which is embedded throughout all stages of research. During research design, PPI groups can provide insight into important cultural and contextual concerns within the local population and offer advice on the development and integration of interventions in local communities. In terms of participant recruitment, PPI can aid in developing recruitment strategies to include hard-to-reach groups, such as women, who are typically underrepresented in oncology research in SSA.5 Through dissemination of research findings, a sustainable partnership with PPI can improve efforts in the interpretation of results, advocacy and awareness of oncology research. In turn, increased advocacy and awareness have the potential to amplify funding initiatives for oncology research.Despite the promise of PPI to strengthen oncology research in SSA, multiple structural, systemic and cultural barriers exist that hinder their implementation. Unfamiliarity with the concept and potential benefits of PPI among researchers and community members is a major hurdle.5 This is partly due to the educational and societal gap between researchers and patients about the role of patients in research and how PPI relates directly to the local community, which encompasses diverse cultures and customs in SSA.6 Consequently, there is no national policy addressing the incorporation of PPI into research in SSA. As a significant portion of guidelines and suggestions on how to incorporate PPI into research, such as the INVOLVE framework, is generated from high-income countries, there is a need for the development of regulatory policies that provide specific guidance based on the aims of local and regional communities in SSA.7 Practical models of PPI integration into national cancer governance structures are emerging. In Kenya, structured patient and advocacy engagement within the National Cancer Control Programme ensures that lived experiences inform planning across the continuum of care and research.8 In the absence of formal national mandates, PPI integration can be developed organically through community activation and civil society coalitions. The African Organisation for Research and Training in Cancer and Kenya Network of Cancer Organisations provide examples of training civil society organisations on political advocacy, mobilising patient advocates and ensuring representation in policy dialogue, service design and increasingly research discussions.9 10 In addition, incorporating PPI into oncology research in SSA without engaging with local participants and ensuring genuine community ownership can result in a tokenistic or ‘checkbox’ experience for participants, with no actual impact.5A sustainable implementation of PPI in oncology research in SSA will require regional collaborations between sponsors, local community leaders, academia, the private sector, ministries of health and non-governmental organisations. Existing partnerships, such as the West African Breast Cancer Study group and the African Consortium for Cancer Clinical Trials (AC3T), can provide a foundation that may be enhanced through the incorporation of PPI. Sponsors have a key role in prioritising specific points of engagement (accrual planning, recruitment and retention, dissemination, informed consent, data and safety monitoring board participation), which allows for a better understanding and the value of PPI for researchers. Establishing specific training initiatives based on local needs and engagement is essential, as the adaptation of training based on local participants’ needs was key to the success of a recent PPI-incorporated stillbirth programme in SSA.5 To ameliorate difficulties in including community members from hard-to-reach regions in PPI initiatives, digital tools such as mobile health (mHealth) can be leveraged to serve as a sustainable implementation system to facilitate PPI in SSA. Recent strides have been made by South African stakeholders to actively engage patients in healthcare decision-making through the promotion of the National Cancer Strategic Framework and Health Technology Assessment.11 12 Due to the scarcity of literature focused on PPI integration in SSA, there is a need for pilot studies and interventions aimed at determining the feasibility of PPI integration in oncology research, with an iterative method for learning and improvement, such as the Plan-Do-Study-Act model. To provide a foundation for sustainable funding of PPI implementation, dedicated public engagement grants will need to be enacted at the local and regional levels. The establishment of local, regional and institutional policies, which provide the governance, regulation and ethical oversight of implementation strategies of PPI in oncology research, will require the engagement of community members as co-developers.Our recommendations for immediate action are as follows: development of a continental strategy by the African Union for the integration of PPI into oncology research and facilitation of the centralisation of shared best practices; establishment of local and regional partnerships that connect community members and research ecosystems; launching of sustainable funding mechanisms and prioritisation of research initiatives for scaling successful pilot projects to broader implementation and sustainability.