World Bladder Cancer Patient Coalition Survey

In March of 2020, I was invited to join the patient advisory board for the World Bladder Cancer Patient Coalition. The board consists of members across the globe, with various stages of bladder cancer, different diversion systems, and a wide range of treatment protocols.

Our goal is to bridge the gap between the patient experience and medical providers. Over the course of a year, we dove into various patient experiences and shared our own stories. Through this, we began developing a first-of-its-kind international survey for bladder cancer patients and caregivers.

The actual patient experience

As a group, and with our advisors, we found that there is not enough data on actual patient experience when it comes to bladder cancer. We know the general statistics with regards to diagnosis rates, survivorship, and treatment success. We don't know what it means to be an individual living with and fighting this disease.

This data is crucial in developing treatments that not only prolong life but improve the quality of life as well. We want to know more about why patient diagnosis is often so delayed, how urinary diversions are chosen, and what the financial and mental impacts are for the bladder cancer population.

My perspective and goal

I had the wonderful opportunity of being the voice for the "under 40" patient demographic. As well as the only one diagnosed stage 4, still in active treatment, AND have an ostomy.

My goal when helping develop the survey was to ensure the younger bladder cancer patients were included in the study and that the data was not just captured from the viewpoint of survivors.

It took nearly six months to write survey questions and go through the tedious process of editing down the questions to ensure the survey was not so long that participants would get overwhelmed and click away before completing. How to ask inclusive questions that captured as many experiences as possible while not taking hours to complete was by far the most difficult part of creating the survey.

Then we waited anxiously for the experts to create the actual online survey.

Months of work come to fruition

When the survey was finally available to the public it was such a relief to see months of work come to fruition. But then the hefty task began of getting the word out about the survey and collecting responses.

Finding bladder cancer patients and alerting them to the survey has been our ongoing project for four months now. We have canvased Twitter, Facebook, various bladder cancer support organizations, and even made posts on our own social media accounts to get the word out. We had a lofty goal of finding participants from all countries.

The Global Patient Survey closed on January 31st, 2022, keep an eye on their website as the final data will be released later this year!