Is there a role for including patients and patient advocates in professional society meetings like the annual AUA meeting? And what should that role be? This article discusses my experience as an inaugural presenter in the AUA Patient Perspectives Program at the annual AUA meeting and provides my answers to those questions.

The AUA in 2021 announced its inaugural Patient Perspectives Program at its annual meeting as “an opportunity for patients and/or patient advocates to address the disparities that may exist between urological professionals’ recommended treatment plans and patients’ quality-of-life preferences” and for “patient advocates and urologic healthcare providers to improve communication and seek to close the gap between best medical treatment practices and patient quality-of-life considerations.” Urologic oncologist Dr Angie Smith reached out in June 2021 to ask if I was interested in entering a submission for the inaugural program. Given my passion for patient-researcher partnerships and keen interest in attending professional society meetings, I was intrigued by the possibilities. I also felt strongly that the work that she, fellow urologic oncologist Dr John Gore, Bladder Cancer Advocacy Network Director of Education and Advocacy Stephanie Chisolm, and I had done deserved a wider audience. Therefore, I submitted the required abstract.

Our project met the research on patient-specific urological health issue criterion. We had constructed and conducted a patient survey using the BCAN (Bladder Cancer Advocacy Network) Patient Survey Network to query patient preferences regarding study design, outcomes, and conduct between radical cystectomy and bladder-preserving chemoradiation. In my role, I applied lived and research advocacy experiences to provide critical feedback to design a survey that queries patient preferences regarding study design, outcomes, and conduct. That feedback included the addition of sexual and bowel function outcomes and logistical burden (eg, transportation, time off work), order of listed patient outcomes, word selection (eg, urinary symptoms changed to urinary function), and clarification that cystectomy may also include additional organ removal (eg, prostate, uterus, vagina).

The template was straightforward, given my advocacy and science experience: Introduction, Materials and Methods, Results, and Conclusion. With the generous support of my colleagues (particularly, Dr Smith), the required 2,280-character abstract was prepared. Character limits were somewhat familiar to me from my advocacy work, but I had no experience submitting content with character counts myself. I learned quickly how to reveal word and character count (with and without spaces!) using Microsoft Word.

In July 2021, my abstract was accepted for the Las Vegas meeting in September. I made travel arrangements and awaited guidance. However, the Delta variant of COVID took hold and it became clear that an in-person meeting was not possible. The meeting itself was recalibrated to a virtual format, but the Patient Perspectives Program was delayed to the following year.

In February 2022, I was advised that presentations would be held as planned during the May New Orleans meeting. Logistical communications in February were followed in March by a draft abstract for AUANews. I was also asked to pre-record my presentation in late March. All was well until I noticed the last line of instructions:

Your other slides [after title slide] “should be your virtual poster from which you will present.”

I had forgotten (or missed) the requirement for a poster! I had seen dozens of posters during my advocacy work and knew how difficult a poster would be to construct using PowerPoint. I desperately needed a template and reached out to my AUA contact for one. I received a screenshot of a typical scientific poster and later a blank screenshot with a poster outline. Nothing editable.

Undeterred, I reached out to my researcher colleagues who are in the business of routinely generating posters. Dr Smith came to my rescue with an editable PowerPoint template. I then leveraged the prepared poster to create related slides and record my presentation. A bit of a perfectionist about recorded presentations and with no video editing software option, I had to repeatedly re-record to get 1 acceptable 6-minute presentation. I had plenty of practice.

Nine awardees, including me, arrived in May at the Dome Arena (2 additional awardees had pre-recorded presentations). We presented to about 25 people in a somewhat busy and noisy setting open to the exhibit hall but off to the side. Acoustics reflected the inherent challenges of the setting: acceptable though not optimal.

Presentations were followed by Q&A, where I received one very technical, though logical, design question on the planned clinical trial. It was well beyond my capabilities and role. I deferred to my clinician colleagues who had been very generous with their time and were in the audience. Dr Gore came to the rescue.

After debriefing with AUA staff and connecting with the other attendees, I joined sessions focused on my bladder cancer research advocacy context and networked with research colleagues. As my second in-person meeting post-COVID, it was exciting and meant a lot to see people in person despite my KN95 mask.

The program evolved in its second year. Universal poster creation challenges led to an AUA decision to remove them from the 2023 process. The abstract outline was modified to be less “researchy” and more familiar to patients. While not completely successful, these improvements were directionally on target and more patient-friendly.

Going forward, a higher level of patient engagement in the design and execution of the program should be considered. The goals and submission collateral should be recalibrated with patient partner input to ensure alignment with the intent and create entry collateral consistent with the skills of patient partners. Discussions on patient engagement goals and exploration of how to optimize that engagement would be very productive and illuminating. It may be time to consider including patients as panel members and presenters in select sessions and including 1 or more patients in program planning. This would better anchor the goals and outcomes of the meeting to the real-world challenges of facing off to patients and advancing urology through research and clinical trials. Contexts which have taken these steps have found that they pay significant dividends.