Shared evidence & impact: Shaping our next patient and carer survey

Advocates Day closed the way it began: with the room doing the work together. The final session, “Shared evidence & impact: Shaping our next patient and carer survey,” used a World Café format, four tables, three short rounds, and members moving between them, to help shape the next chapter of WBCPC’s research.

Why now

Alex Filicevas, Executive Director of WBCPC, opened with a look back at the Coalition’s 2023 Global Patient and Carer Survey: nearly 1,200 respondents across 45 countries, 65 questions spanning diagnosis, treatment, emotional support and a first-of-its-kind carer module. The findings have travelled widely since, cited in conference presentations, award-winning posters and national advocacy campaigns alike. But WBCPC has grown substantially since then, from a smaller founding group to 17 member organisations and a much broader scientific network, so the time has come to check the baseline again and add the questions this year’s conversations have raised, particularly around access to new therapies.

Four tables, four questions

Each table, hosted respectively by Christine La Rose, Helen Lacy, Melanie Costin and Lauren Pretorius, took on one theme central to the next survey:

• Reaching who we missed. The 2023 survey skewed toward high-income countries and was heavily shaped by which member organisations existed at the time. Participants proposed surveying carers alongside patients rather than just one or the other, partnering with nurses and nurse associations to reach people with metastatic disease during treatment, keeping paper surveys and community radio for those without easy technology access, and working through trusted local groups, in Australia, Men’s Sheds came up as one example of reaching an audience patient organisations might otherwise miss.
• Life after diagnosis. One word came up again and again at this table: support, whether psychological, financial or practical, and how hard it often is for patients to know where to find it. The group also raised splitting some questions by gender for cultural comfort, and probing anxiety, workplace flexibility, and the quiet stigma that still surrounds a cancer that affects such a private part of the body.
• The diagnosis journey. This table’s findings were the most sobering: confusing health systems, long waits between diagnosis and treatment, and shortages of specialist doctors, particularly in parts of Africa. Financial toxicity came up strongly too, not just the cost of travel to care, but treatments that simply aren’t offered because they’re unaffordable. Public and GP awareness remains low enough that women are still being misdiagnosed with urinary tract infections. The table’s consensus was blunt: little has genuinely changed since 2023, and the next survey needs sharper questions to show decision-makers precisely where the gaps remain.
• Shared decision-making. Patients often can’t meaningfully weigh in on their own care until they understand enough to do so, “you don’t know what you don’t know,” as one participant put it. The group proposed comparing how informed and included patients felt before and after that understanding grew, alongside questions on whether patients had time to digest information, knew they could seek a second opinion, and felt able to ask questions in the room at all.

What happens next

Every idea raised during the session went up on a board that had stood, unexplained, at the venue all day. On Public Day, a wider group of Forum participants will add further ideas of their own and vote on which matter most, carrying the conversation directly into the next stage of the survey’s design.

It was a fitting way to close two days built entirely around members learning from each other, on Health Technology Assessment, organisational growth, partnerships and conflict, by using that same collective voice to shape the evidence that will carry their advocacy forward.