Rick Bangs, MBA, Bladder Cancer Advocacy Network (BCAN)

Research study results, including clinical trials, are almost universally documented in scientific literature. However, they are typically not shared with patient participants nor the patient community to which the study is most relevant. I chaired the patient advocate committee at Southwest Oncology Group (SWOG) and the patient advocates there assessed this gap as critical and needing closure. As part of this and similar activities, SWOG created a plain language template for patients to gauge interest in and relevance of a given clinical trial. That template will form the backbone of a similar template for sharing results. Recognizing the significant needs for plain language, SWOG hired a plain language expert as a full-time staff member. Addressing the gap in sharing results is a long-term goal for the role but has not made the cut for implementation.

Rick Bangs speaking at the Patient Perspectives program at the 2025 Annual Meeting. 

Bladder cancer has seen remarkable progress in the past decade with the rise of immunotherapy beyond bacillus Calmette-Guérin (which has been used for decades in bladder cancer). As the bladder cancer patient advocate, I wanted to fill the gap in sharing of research results in this very fluid environment. I saw an opportunity to fill the gap after I started hosting a podcast for the Bladder Cancer Advocacy Network in 2021. The podcast, Bladder Cancer Matters, is for, by, and about the bladder cancer community. The target audience is patients, partners, family members, and friends, though clinicians are welcome.

Since 2022, podcasts have been prepared to cover 5 research studies including 3 clinical trials. The administrative burden for a podcast is low: recording platform, producer, host, discussion guide, and guest. Scheduling can be challenging, but perseverance pays dividends. Standard process is a 30-minute planning call preceded by preparing preliminary questions or touch points, planning call, draft set of questions, revisions to questions, recording session, editing, and promotion. In addition to low burden, podcasts reach many in the patient population and can rapidly follow abstracts and presentations. Publication of a journal article is not a prerequisite and usually takes months to prepare the article, find a publisher, and work through review. Podcasts can be prepared quickly, and the host can ensure plain language by structuring the discussion guide appropriately, framing plain language questions, and asking for clarification on an ad hoc basis during the podcast.

Results for 5 studies have been shared: SWOG S1011 (Lerner), JAVELIN (Powles), VESPER (Galsky), quality of life after radical cystectomy (Bochner), and CSC Cancer Experience Registry. More are planned.

Standard questions for research study podcasts include the following:

• • Tell us about the study. What were the questions it sought to answer and for what patients?
  • Who funded and conducted this study?
  • What was the prior standard of care?
  • What is the history of the treatment here and in other cancers?
  • Why is the trial important?
  • Details on the intervention.
  • What is the impact on standard of care/usual care and when will guidelines reflect the change?
  • To whom does it apply?
  • Should there be exceptions? Are there cases where an/the alternative would be preferred?
  • If applicable, can side effects be mitigated? How?
  • If I had the previous standard of care, should I be concerned? Should I do anything?
  • More work coming from and already available from this study that might be interesting for patients to hear about?
  • More work in this space?
  • Any final thoughts?