Marginalised voices, crucial expertise: mpox patient experiences in Kinshasa's poorest neighbourhood

To investigate illness experiences of recovered mpox patients in Pakadjuma and to co-develop measures with them and local health care workers to integrate them into the mpox health emergency response. Principle investigators: Tamara Giles-Vernick & Jules Villa, Institut Pasteur Research Snapshot: The role of recovered mpox patients in outbreak response This mixed methods action research in Pakadjuma, Kinshasa's mpox epicentre, showed that recovered patients played a crucial role in supporting outbreak response: conveying public health messaging to marginalised people at risk of mpox, and leading community initiatives that supported livelihoods. View the snapshot ‍ What did the study set out to achieve? The role of people directly affected with disease in strengthening outbreak response has been explored in previous Ebola and HIV epidemics. Yet, recovered patients were not integrated into the mpox response before this project. Pakadjuma is a densely populated informal settlement in Kinshasa, characterised by extreme poverty, high population mobility, and recurrent epidemics. Identified as the epicentre of the mpox outbreak in late 2024, the area faced significant challenges relating to stigma, mistrust, and access to care. The project employed mixed methods and co-creation. Local community health workers identified recovered mpox patients. A survey (253 participants), and interviews (37 recovered patients) were conducted to examine mpox patients lived experiences, community perceptions, and life trajectories. Then, mpox recovered patients co-designed participatory interventions with local healthcare workers, intended to strengthen the mpox response and help patient recovery. ‍ What were the key findings? During the mpox outbreak in Kinshasa, Democratic Republic of the Congo (DRC) in late 2024, this project, PAKAMPOX, demonstrated that recovered patients can become effective public health ambassadors when formally recognised, collectively organised, and supported by local health authorities. Findings show that community centred, recovered-patient-led approaches enhance outbreak response while enhancing patients' agency and resilience. Local recovered mpox patients contributed significantly to public health efforts by acting as trusted intermediaries between communities and health services. Their firsthand experience gave them credibility with local populations and the mpox response, helping to reduce mistrust and stigma, locating cases, referring them to adequate care structures, and supporting engagement with formal health care workers. Some recovered patients had access to social networks often beyond the reach of health actors, including sex workers, men who have sex with men, and highly mobile populations. Recovered patients formed The Ambassadors of the Limete Health Zone, a legally recognised association. Through co-designed initiatives, including income-generating activities such as chair rental and yogurt production, the association strengthened solidarity, autonomy and resilient livelihoods. The association sustained its role in community engagement and response support during a cholera outbreak in July 2025. ‍ Implications for humanitarian practitioners and policymakers The study underscores the value of local initiatives and participatory-action research in outbreak response, highlighting how community-based approaches can improve risk communication, enable faster identification of cases, and effectively fight stigma. The formal institutionalisation of the Association was a key factor: providing recovered patients with collective identity, responsibilities, and purpose, providing organisational stability, and a platform to engage with health authorities. The involvement of recovered patients was particularly effective because they were already trusted members of the community. The PAKAMPOX project illustrates how such individuals, when engaged meaningfully through participatory and co-created interventions and provided with a recognised, formalised role in a broader health system response, can deliver concrete outcomes: both for community resilience and to strengthen the reach and impact of response activities, with results that can be sustained for future outbreaks.