Learning from each other: four member projects that worked

Advocates Day at the World Bladder Cancer Patient Forum 2026 in Hong Kong turned to what members have actually built, with four organisations presenting projects that worked at home and could work elsewhere. None of us holds a monopoly on good ideas, and the session ran on a simple assumption: the most useful resource in the room is often something another member has already tried.

• Adam Lynch, Founder and CEO of BEAT Bladder Cancer Australia, presented two projects. The first answers a problem created by progress: as treatment options multiply, patients struggle to work out what exists and what they can access. BEAT’s four single-page pathways map the options for diagnosis, non-muscle-invasive bladder cancer (NMIBC), muscle-invasive bladder cancer (MIBC) and advanced disease, built with its patient and health advisory teams, updated as new treatments arrive, and designed to make the conversation with the doctor a two-way one. He offered them to other members to adapt. The second, Voice of the Patient, brought oncologists’ positions from across Australia, 30 patient stories and BEAT’s own statement into a single submission, pressed on pharmaceutical companies, clinicians and government at the same time. Enfortumab vedotin with pembrolizumab, a first-line treatment for metastatic bladder cancer costing around 15,000 Australian dollars every three weeks, is now subsidised at about 50 dollars, with free access programmes opened before that. It took 22 months, and, as Adam said plainly, patients were lost along the way.

• Angela Pelletier of Bladder Cancer Canada presented the **Healthy Living Guidebook**, which began with a pattern rather than a plan: across the information line, webinars, support groups and the online forum, the same questions kept arriving about eating well, exercising safely and managing stress. Volunteer Stephen Wilson led the writing, with a dietitian, a physiotherapist, patient reviewers with lived experience and the medical advisory board all contributing. Stephen died before it was finished, after more than ten years with the organisation, and the guidebook is dedicated to him. Released in January 2025, it covers nutrition, hydration, sleep, stress and relationships, and includes a practical exercise programme for recovery after a Transurethral Resection of Bladder Tumour (TURBT) or a radical cystectomy, including what changes with a stoma. Angela had exactly those questions herself after her own cystectomy. Her lesson for the room: listen to the questions your community keeps asking.

• David Garrigues Ronda, Co-Founder, Secretary and Treasurer of CANVES, described a patient day built entirely from patients’ own questions. Two years old and now more than 200 members strong, Spain’s first bladder cancer patient association surveyed its members and turned the replies into three blocks: localised disease, cystectomy and urinary diversions, and advanced disease alongside emotional quality of life, moderated jointly by members and health professionals. The day left a resource behind, 40 questions answered by health professionals in language anyone can follow, now published on the association’s website, and it surfaced what comes next: women and bladder cancer, now becoming a dedicated strand, along with stoma management, sexuality, and the risks of vaping as well as tobacco. One request was as practical as they come, that toilets be clearly signposted at every event. They did not ask patients in order to organise a day, he said, they organised the day so that patients would understand it.

• Bryan David Mkandawire of One Community, Malawi, closed with awareness work in a system where reaching people and reaching services are two different problems. Care runs from three central hospitals down through district hospitals, health centres and village clinics, and for many patients the cost of travel decides whether awareness ever becomes a diagnosis. Rather than asking men to come to him, One Community takes bladder cancer to where they already are: barber shops, including free haircut days run with a partner, men’s conferences at religious institutions, and health talks and posters in health facilities. Men trained as male champions carry the message to other men, and every message is shaped to respect chiefs as custodians of culture. A simple monitoring tool built with public health services tracks what people are hearing and whether they pass it on. The constraints are real: too few facilities, volunteers who move on, and one-off events whose impact is hard to measure.

Four countries, four very different resources, one shared method: start from what patients are already asking for, and build the partnerships that carry it further than any organisation could alone. Bryan’s closing line stayed with the room. “If we cannot invite many to meetings where we need to talk to them about bladder cancer, at least we can invite ourselves to where they are found.”

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