Charting the path to Shared Decision-Making: from patient as passenger to patient as partner

On Public Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, Adam Lynch, Founder and CEO of BEAT Bladder Cancer Australia, moderated Charting the path to Shared Decision-Making with Melanie Costin (Fight Bladder Cancer), Dr Brian Ho (Hong Kong Urological Association), Mădălina Iamandei (All.Can International), Nicole Dixon (Johnson & Johnson) and Dr Murallitharan Munisamy (National Cancer Society of Malaysia).

Adam began by cutting through the jargon. Shared decision-making means moving past the model where the doctor decides, to one where clinical and patient perspectives carry equal weight. It means a patient is not simply consenting to a procedure but actively choosing the path that fits how they want to live. Then he put two figures from our 2023 global patient and carer survey on the table: 82% of respondents said they needed more information than they were given, and three quarters of people who had their bladder removed said no option for keeping it was ever discussed with them. That, he said, does not sound like a foundation for shared decisions.

Melanie Costin: you do not become an expert overnight

Melanie spoke as both a patient and the head of a patient organisation. Being told you have bladder cancer does not make you an expert in it, she said, yet within days you are making decisions that will shape the rest of your life. She remembered her own diagnosis clearly: frightened, everyone talking too fast, wanting to go home, and no idea what to ask. The only question she managed was whether she should call them or they would call her.

Her key point was that shared decision-making applies even when clinical options are limited. What information a patient gets and how, what support they need, which outcomes matter to them, how care is delivered: all of that is still a decision. And what patients most often say they were never told is what life will be like afterwards, covering urinary function, body image, intimacy, relationships, work, travel and independence. Raising those things feels almost embarrassing against a cancer diagnosis, which is precisely where patient organisations can help, by preparing people to ask without ever steering them towards a particular treatment.

Dr Brian Ho: what the patient values has to be found, not assumed

Dr Ho brought the clinician’s dilemma. Bladder cancer has seen an explosion of new information and technology, which is overwhelming even for doctors. After a diagnosis most patients are in shock and cannot absorb much, yet the information still has to be shared. The difficulty is giving enough without overloading, and leaving time to process.

He was candid that medical training has focused on survival above all, and that the question now is whether survival at any cost is what the patient actually wants. His practical approach: put the detail, the numbers and the complications into a booklet the patient can take home, and use the consultation to find out what they value most. Wanting to live long enough to see grandchildren and wanting to stay active and independent for as long as possible lead to genuinely different treatment paths.

His advice to patients was equally practical. The diagnosis appointment is not the moment to bring everyone. At the second consultation, come back with family or a friend, having had time to absorb it, having read up, with questions written down. And because people blank out once they are in the room, he suggested writing everything down beforehand like an email you never have to send, then bringing those notes.

Mădălina Iamandei: shared decisions are also an efficiency question

Mădălina placed the discussion in the wider system. All.Can International brings patient representatives, clinicians, policymakers and industry around one question: are the resources going into cancer care being used efficiently, in line with what matters to patients and to society. With cancer diagnoses projected to rise by 77% between 2022 and 2050, she argued that no system is ready, and that care organised around hospitals has to shift towards care organised around people.

Her organisation’s newly launched work on person-centred cancer care addresses shared decision-making directly, and the evidence is consistent across tumour types: it raises satisfaction, improves adherence to treatment, and leads to better outcomes. She also offered a model already working in the Netherlands, where an integrated decision-making tool puts three things on the table at once for clinician, patient and carer: information about the tumour, the person’s general health, and their own preferences and goals, all visible to everyone in real time through a shared portal. Everyone works from the same page, in the same language.

Nicole Dixon: trust is the foundation, but trust is not the same as a shared decision

Nicole brought findings from the Global Bladder Cancer Burden Survey, conducted with the Coalition, the Bladder Cancer Advocacy Network and the International Bladder Cancer Group, covering around 800 people living with non-muscle-invasive bladder cancer (NMIBC) and 800 treating urologists across six countries. The aim was to understand how care is experienced, not just how it is delivered.

The numbers were striking. 94% of patients said they felt comfortable speaking openly with their urologist, yet more than half hid the emotional and mental toll of the disease, and one in three did so often or almost always. 70% said their trust in their urologist actually stopped them raising their own treatment preferences. Nine in ten wished their doctor had helped them better understand all the options available, eight in ten who had undergone bladder removal wished more bladder-preserving options had been offered, and 57% regretted not being clearer about their own priorities.

Her conclusion has stayed with the room: trust is the foundation of shared decision-making, but trust is not shared decision-making. She offered clinicians a short list of questions that change a conversation, including what matters most to you, what worries you most about treatment, what are you hoping this treatment will let you keep doing, and which side effects would be hardest for you. Then check what the patient understood in their own words, and before anything is signed, ask whether they are ready to decide today or need more time and support. The goal, she said, is a patient who is a partner rather than a passenger.

Dr Murallitharan Munisamy: the elephant in the room, and what Malaysia built

Dr Munisamy took the macro view and named what he called the elephant in the room. Clinicians are trained for years to do the clinically best thing, and shared decision-making means accepting a patient’s choice that may not be it. That dissonance, he argued, is what stops shared decision-making being rolled out at scale, and it has to be addressed in medical school and postgraduate training, not just in policy documents. He drew on a traditional concept from his own culture describing the ability to accept and surrender willingly.

He was equally blunt about the practical barriers. Time is the first: he sees 60 patients a week, and systems reward throughput, not conversation. The second is litigation, and the defensive medicine that follows when clinicians fear being blamed for a decision the patient made. He also pointed out that excellent shared decision-making today tends to come down to individual clinicians’ own character rather than their training, which is exactly why it cannot be replicated.

Malaysia’s answer was the most concrete proposal of the session. Community navigators, many of them retired healthcare professionals, receive around 100 hours of training plus ongoing upskilling. After seeing the doctor, the patient moves to another room and sits with a navigator who maps out what was said, translating both the language and the jargon. Crucially, patients are no longer asked to decide the same day. They take roughly 72 hours at home, talk it through with the navigator, then return to their doctor. It runs nationally in oncology, where only a handful of hospitals are involved. Scaling it to urology, surgery and gynaecology, where most diagnoses actually begin, is the next challenge.

What the panel agreed on

Six perspectives, one conclusion: a decision is only shared when the patient has clear information, genuine options, and enough time to weigh them. That means preparation on both sides of the desk, and it means treating shared decision-making as something that happens at every appointment rather than once.

Getting ready for your next appointment? Our factsheet Key questions to ask your doctor or nurse is built for exactly the moment this panel described, and sits alongside our other free patient and carer resources. You can also follow our work on shared decision-making, developed with healthcare professional societies across Europe.