EPAG Lisbon Meeting sets bold agenda for 2025 patient advocacy
The latest meeting of the European Patient Advocacy Groups (EPAG) on 5 and 6 December in Lisbon set out an energised roadmap for patient engagement, global health collaboration, and major advocacy initiatives for the year ahead.
The EPAG group of the EAU Patient Office work to ensure that patients’ voices are represented in healthcare decisions and in policy. EPAG members ensure that the voice of the patient is more and more integrated in the development of urological treatment options.
With a full day of discussions on Saturday, this time the Patient Office EPAG members tackled issues ranging from prostate cancer awareness in Africa to the rising economic impact of urinary incontinence in Europe.
Spotlight on global health: The BALANCE Study & Sierra Leone
One of the major discussions revolved around the BALANCE study.
The BALANCE study focuses on better understanding how prostate cancer impacts Black men of African and Caribbean ancestry, as well as men of mixed ethnic backgrounds.
As life expectancy rises in parts of Africa, several EPAG members shared the concern about a looming wave of prostate cancer. EAU Patient Office Chair Prof. Eamonn Rogers visited, together with EAU Adjunct Secretary General James N'Dow and Tina Davies, Sierra Leone as part of the BALANCE project, where alarmingly there is just one urologist for every 8 million people. Tragically, many men die from metastatic disease due to lack of early detection and treatment.
During the Sierra Leone visit, the BALANCE group met with the World Health Organisation (WHO) and Sierra Leone’s Minister for Health, underlining the urgency of establishing patient support and awareness networks for prostate cancer in countries where none currently exist.
From cancer to incontinence
As the conversation turned to initiatives and work done around urinary incontinence, it was revealed that Urinary Tract Infection (UTI) may soon surpass cancer as the costliest disease for EU Member states, from economically, socially, and mentally perspective. EPAG members including Mary Lynne Van Poelgeest-Pomfret highlighted how incontinence affects sexuality, mental health, and even environmental factors (e.g. the increased use of disposable incontinence pads).
To address these disparities, the Patient Office is launching REVEAL OAB PROMs, the first-ever incontinence study with a patient support group. The project aims to advance recognition of urinary incontinence as a disability. By building on last year’s progress at the EAU Congress, where accessible toilets marked a small but meaningful step, for EAU26 the project will extend its efforts to address discrimination faced by people with incontinence during one of the roundtables in London.
The launch a podcast exploring male discrimination related to urinary issues, will further help to bring more inclusion and under-represented groups into the conversation.
The Patient Office will lead efforts to close gaps in urinary incontinence care by elevating the REVEAL project within policy circles. As Mr. Rogers noted, “nothing is more powerful than approaching a politician with real patient stories’’.
A closer look at Bladder Cancer: The BCLEAR Project
The EPAG group also discussed the BCLEAR project, an ambitious, collaborative initiative to improve bladder cancer literacy in Europe. Under the project a needs-assessment will be conducted across Europe to understand gaps in support for bladder cancer patients and families. One key goal is to develop a shared decision-making (SDM) package for healthcare providers (HCPs), with tools to implement it in daily practice. Another target is to improve communication skills among HCPs, fostering better dialogue with patients and families, enabling collaborative problem-solving, advocacy, and systemic change.
In short: BCLEAR aims not only to treat bladder cancer medically, but will transform how patients are heard, involved, and supported. It will also be one of the topics of our roundtables at EAU26.
Digital literacy & patient trust
The EPAG Meeting also reviewed progress on the Patient Information website. The information provided on the website is accurate and evidence-based on the EAU’s latest guidelines. The Patient Information website is fully independent and relies on the expertise of a diverse panel of urologists and plain language specialists to tailor this information to the highest standard. Because of this recognition, clinicians across the world are increasingly comfortable referring patients to our site.
That trust from healthcare professionals is crucial in the expansion and dissemination of the Patient Information website, which will soon be available in multiple languages.
Patient Advocacy at EAU26
This year the Patient Office received nine new abstracts to be presented at EAU26, signalling growing interest in patient-driven research. The Patient Office chairs expressed strong desire to bring in younger voices, balancing “functional” and “academic” approaches, whilst ensuring advocacy reflects real-world patient needs.
The EPAG group also discussed refining its roundtables at the upcoming EAU26 Congress in London. A sleep expert will join to discuss topics such as the link between nocturia in benign prostate enlargement (BPE) and sleep deprivation, highlighting an under-discussed but important aspect of men’s urological health.
Why all of this matters
EPAG’s Lisbon meeting was a reminder of the shared community that patients of all backgrounds can build meaningfully together, from Africa to Europe. The EAU Patient Office couldn’t be more proud to represent our passionate Patient Advocate members and be the receptacle for so many exciting ideas and projects. We look forward to seeing you at EAU26!
