WBCPC calls for shared decision-making to become the standard at the World Cancer Congress 2026

The World Bladder Cancer Patient Coalition (WBCPC) is in Hong Kong for the World Cancer Congress 2026, organised by the Union for International Cancer Control (UICC) with the Hong Kong Anti-Cancer Society.

On September 25, 2026, our Executive Director Alex Filicevas spoke in the session “Promoting Shared Decision Making in Cancer Care”, alongside Olivier Exertier, Executive Director, and Margie Hickey, Board of Directors, of the International Kidney Cancer Coalition (IKCC); Mavis Lui, Health Insights Researcher at the Lymphoma Coalition; and Dr Michael Jewett, IKCC Past Chair and Professor at the University of Toronto. All three coalitions are members of the Global Cancer Coalitions Network (GCCN).

What is shared decision-making?

Shared decision-making (SDM) is when you and your healthcare team look at the evidence, the benefits and risks of each option, and what matters most to you, and then make a decision together. It helps people understand their options, feel more in control and have fewer regrets about the choices they make.

GCCN’s guiding principles, shared across bladder, kidney and lymphoma, set out what good SDM looks like:

• It is an ongoing process, not a one-off conversation. Decisions come back at diagnosis, at treatment and at recurrence.
• Patients need support with timing, framing and emotional readiness.
• Clinicians need the right tools, training and time.
• It must be equitable and inclusive for all.

What people affected by bladder cancer told us

Our global patient and carer experience survey heard from 1,198 patients and 67 carers in 45 countries, in 11 languages. The findings, published in European Urology in 2023, give us evidence, not anecdote, when we sit down with clinicians and policymakers.

Most respondents said they were satisfied with their involvement in decisions, and only one in ten wanted more. Yet the same people told us that important conversations were missing:

• Only 60% had their treatment options completely explained, and 82% needed more information at diagnosis.
• 73% heard nothing about patient organisations, even in countries where these groups exist.
• Over a quarter had their bladder removed (radical cystectomy). Of these, 74% said no option to keep their bladder was discussed, and 45% were not counselled on sexual side effects.

Who gets left out

The gaps follow where you live and who you are. One in four people with bladder cancer is a woman, yet only 11% of women were counselled on the sexual side effects of surgery, against 36% of men. Among respondents living in rural areas, 22% found communication about their tests not at all clear, almost twice the rate in cities (12%).

Partners shared a similar picture from their own global surveys. In the Lymphoma Coalition’s 2026 survey of 9,991 people in 108 countries, only 28% were given more than one treatment option. IKCC’s survey found that people in low- and middle-income countries were less likely to be involved in decisions as much as they wanted.

What we are doing

Everything we do starts from one idea: both sides of the conversation need support.

BCLEAR: Through BCLEAR (Bladder Cancer Literacy for All: Advancing Knowledge and Care in Europe), an EU co-funded project, we are helping people across Europe recognise the early signs of bladder cancer, understand why early detection matters and take part in shared decisions about their care. Together with our partners, we are building an education toolkit for citizens and patients, an SDM module for patients and training modules for healthcare professionals.

Setting the standard in urology: With the European Association of Urology (EAU) Patient Office, patient advocates, nurses and urologists co-developed a consensus on shared decision-making, published in 2025. It sets out what good looks like in urology.

GCCN: Through GCCN, more than 775 patient organisations now share the same evidence and the same language on SDM. That is what turns a published principle into a conversation in a clinic room. Across bladder, kidney and lymphoma, the network agrees on four next steps:

• Practical SDM resources that patients and clinicians can use in a real consultation
• Education programmes and materials co-created by patient organisations and healthcare professionals, so they speak to both sides of the table
• Patient-led SDM networks. In our survey, half of respondents contacted a patient organisation, which is where preparation for a decision can begin
• SDM embedded in clinical guidelines. Resources and networks start the change; guidelines make it stay

We are also designing our second global patient survey, expected to launch in early 2027. It will look at what the first could not, including where people are treated, because a gap we cannot see is a gap we cannot close.

What happens next

Alex closed the session with three asks:

• Policymakers and clinical leaders: embed SDM in guidelines and policies, so it becomes the standard, not the exception.
• Administrators and funders: fund the time and the tools.
• All of us: treat health literacy as an equity measure, not an afterthought.

«Shared decision-making is not only about presenting options. It means an open conversation about the consequences, so people can decide in line with their own values and priorities. Nobody should have to sign a consent form for a decision they were never part of.

Alex Filicevas, Executive Director, World Bladder Cancer Patient Coalition, and Co-Chair of the Global Cancer Coalitions Network

If you want to learn more about how BCLEAR supports shared decision-making, please visit: https://patients.uroweb.org/bclear. You can also read our global survey paper, “Patient and Carer Experiences with Bladder Cancer: Results from a Global Survey in 45 Countries”, and explore the full report and our call to action on our survey page.