Our global bladder cancer patient experience survey launches today
The findings will fill a critical evidence gap, on patient and carer experiences and guide our future work.
We are proud to launch the first-ever global bladder cancer patient and carer experience survey, in partnership with our 11 member organisations.
“The worldwide unique insights and experiences of patients and carers have not previously been measured, and are thus not appropriately integrated into policy, advocacy, and research decisions” said Ken Bagshaw, bladder cancer patient in Canada and Founding President of the World Bladder Cancer Patient Coalition.
Patient and carer experience data help to identify what is important to them, and in turn, drive patient-centred care improvements. Yet currently, this data is lacking and there’s an urgent need to fill this evidence gap.
«"We will fill this knowledge gap and amplify the voice of bladder cancer patients and carers, by quantifying patient experiences and preferences on a global scale. These insights will help us as a global patient organisation to align our work with patient needs, and champion their views to drive care improvements using evidence-based advocacy."
Dr Lydia Makaroff, President of the World Bladder Cancer Patient Coalition
The survey itself covers the entire bladder cancer patient pathway – from symptoms, screening, diagnosis, treatment and care, through to follow-up and survivorship. It is a mix between multiple choice and free text questions, and is available in English immediately. In the coming two weeks it will be made available in Spanish, Portuguese, Italian, Norwegian, Arabic, Japanese, French, Russian and Hindi. The survey will remain open until December 1, 2021, or until we have reached the minimum number of respondents required to have a meaningful analysis.
“Patient experience data can be often overlooked, but they are key to understanding how our healthcare systems are performing for those they are designed to serve” said Dr Ashish Kamat, Chair of the WBCPC Expert Advisory Committee, and Professor of Urologic Oncology (Surgery) at University of Texas MD Anderson Cancer Center; “I’m delighted to contribute to this important work, that will eventually paint a fuller picture of bladder cancer care”.
Findings will be translated into a well-argued report analysing the strengths, weaknesses, and gaps in the bladder cancer care pathway from the patient perspective. The findings report will be published in the first quarter of 2022.
The survey can be completed online.
For more information, visit the project page.
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