Workshop: Health Technology Assessment for patient advocates

Would you fund a new bladder cancer drug that costs two and a half times more than the current treatment, works a little better, and comes with no proof yet that it helps people live longer? That was the question facing WBCPC members on Advocates Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, during a hands-on workshop, “Health Technology Assessment for patient advocates,” led by Fiona Pearce, Co-Chair of HTAi’s Patient and Citizen Involvement group. Instead of slides and theory, Fiona put participants in the decision maker’s seat, using a fictional drug to show exactly where patient voices make the difference.

What is HTA, in plain English?

Health Technology Assessment (HTA) is the process health systems use to decide whether a new drug, device or procedure gets funded. Fiona broke it down to four simple questions:

• Who is the treatment for?
• What does it replace?
• What is its value, weighing up benefits, harms, costs and how confident we are in the evidence?
• What conditions come with funding it?

Most systems check clinical need first, then how well a treatment works, then whether it is worth the cost. Increasingly, a fourth hurdle matters just as much: affordability. “Twenty years ago, cost effectiveness was the main hurdle,” Fiona said. “Now I’m finding there are lots of things that are cost effective, but they’re not affordable.”

What makes patient input actually useful?

Drawing on a project mapping patient involvement across 16 jurisdictions in Asia, Fiona shared what tends to get in the way, limited resources, technical jargon, and no clear path to contribute, and what advocates can do about it:

• Be specific, not just thorough. Committees don’t want volume, they want input that fills a real gap in their evidence.
• Bring more than one voice. A single story doesn’t represent everyone living with the condition.
• Get involved early. Input given after most decisions are already made has far less impact.
• Ask for a feedback loop. Knowing how your input was used, and what was missing, helps you do better next time.
• Push for transparency, on whose views were heard, how, and why.

The case study: would you fund Eurova?

Groups were given a fictional bladder cancer drug, Eurova: an oral tablet taken at home, against a hospital-based IV chemotherapy. Eurova offered a modest improvement in progression-free survival, no proven benefit in overall survival yet, more side effects, and a price tag two and a half times higher. The tables reached different verdicts:

• One group wanted proof of an overall survival benefit before committing, but recognised that avoiding hospital visits partly offset the cost.
• Another preferred a lower price over a longer survival benefit, valuing the certainty and convenience of a tablet over an unproven gain.
• A third was ready to fund it as it stood, weighing the time it would save patients and carers, especially in rural areas and at the end of life, more heavily than the cost or side effects.

Fiona’s takeaway: nearly everything driving those decisions, quality of life, convenience, the burden on carers, is exactly what a strong patient submission adds, because none of it shows up in clinical trial data.

Writing the submission

In a second exercise, groups switched roles to write that submission themselves. A telling contrast emerged: a UK table reasoned in terms of cost against benefit, while an Australian patient advocate pushed back that patients shouldn’t have to think that way at all. “I’m looking at it from a patient’s point of view,” she said. “It gives me options, gives me more time with my family and friends.” Fiona noted both approaches are shaped by experience with mature HTA systems, and both are valid.

Asked by Lori Cirefice, WBCPC President, how to gather input when very few people have used a brand-new treatment, Fiona suggested working directly with treating clinicians or industry compassionate-use programmes, and made a point often missed: testimony from patients who chose not to switch treatment is just as valuable as testimony from those who did.

Five things advocates can do next

Fiona closed with practical steps for organisations wherever they are starting from:

• If there’s no clear path yet, find where informal input is possible, or help build the process as it develops.
• Start an evidence bank of stories and data, ready before a submission window opens.
• Train and keep a pool of people who can write lived-experience submissions, with succession planning in mind.
• Track treatments moving through the pipeline elsewhere before they reach your country.
• Review past HTA decisions, even ones outside your condition, to learn what worked.