Our member, the Uganda Alliance of Patients’ Organisations (UAPO), a national umbrella body for patient groups, shares its statement on people-centred Ebola preparedness and response. Its advocacy spans the wider determinants of public health, reaching well beyond cancer into outbreak readiness and health security, and the conviction at its heart will be familiar to everyone in the All.Can community: people affected by a disease are partners in shaping the response, not an audience to be informed once decisions have been made.
In June 2026, UAPO carried out a rapid community consultation with 91 respondents across 15 districts in Uganda, alongside discussions with young people and community leaders. The consultation set out to understand how communities perceive the ongoing Ebola outbreak in Uganda and the Democratic Republic of the Congo, and what they most need from the response. The central finding was a clear request to move from receiving information towards genuine partnership in preparedness, detection and response.
Trust emerged as the recurring theme. More than 93 per cent of respondents rated misinformation as having a moderate to very high impact on how people behave during an outbreak, with common beliefs that Ebola is fabricated, caused by witchcraft, or created for political and financial gain. Community members pointed to trusted local leaders, religious leaders, youth leaders and local-language communication as the most effective tools for countering it. The same dynamic shapes cancer care, where timely, trusted and accessible information underpins early diagnosis and shared decision-making, themes central to All.Can’s own work on person-centred cancer care.
Accurate information and access to healthcare came through as the two most urgent concerns, each accounting for around a quarter of all responses. Fear of isolation and stigma were identified as leading barriers to accessing prevention and care, and for patients and families that fear reaches well beyond the clinical, taking in separation from relatives, loss of income, social exclusion and psychological distress.
The consultation also exposed a participation gap. More than 84 per cent of respondents felt that communities and patient groups were not involved, slightly involved or only moderately involved in response activities, even though community-led surveillance has been shown to identify cases earlier and strengthen public trust. Respondents set out the roles they want to take on, from reporting unusual illnesses and deaths to supporting surveillance, contact tracing and local preparedness.
UAPO closes with a call to governments, WHO, donors and global health partners to invest in trusted local leadership, inclusive communication that reaches people with disabilities and low literacy levels, social protection for vulnerable households, and preparedness structures that endure between outbreaks rather than appearing only during them. As an umbrella body for patient groups across Uganda, UAPO makes the case that patient organisations carry the credibility and proximity to communities that formal health structures often struggle to build, and that meaningful patient engagement is a strategic investment in health security.
We are proud to share this work from a fellow patient-led organisation. The conviction at its heart, that systems become more effective and more equitable when they are built with the people they serve, is one we recognise across every health challenge, including cancer.
Read the full UAPO article HERE