In recent years, the AUA has amplified patient representation through several organization initiatives. One such effort is the Patient Perspectives Program (PPP), held for the second time at AUA’s annual meeting earlier this year in Chicago, Illinois. The overarching goals of the patient advocacy panels at the conference are to elevate the patient voice as well as facilitate dialogue between urologists, industry representatives, patient advocacy groups, and patients themselves. This year’s program spanned 2 days where 14 patients shared their journey and open discussions were facilitated by Dr Jacqueline Zarro (Figure), herself a survivor.

Figure. Jacqueline Zarro, PhD (right), and Tom Hulsey, BSBA (left), at the AUA2023 Chicago Patient Perspectives Program.

As patient representatives in the roles of speaker and moderator, respectively, we applaud the forum for dialogue as key learnings were gleaned by all involved parties. The fact that the panel sessions are now incorporated into the annual meeting brings to mind the current climate of health care as it has shifted from the earlier doctor-centered arena to the new generation of patient-centered care. Benefits of this shift may be ideally summarized by Dr Abraham Verghese, senior associate chair of the Department of Internal Medicine at Stanford, who said, “The patient is the most unused person in health care.” With shared decision-making and full transparency as current standards, having open forums for dialogue is essential to support one another as the culture evolves.

In fact, we observed and heard from urologists and patients alike that the PPP provided insight that is collaborative and focused, providing the space to address items that may not always be as readily attained in a clinic visit where physician-patient relationship bounds exist. We were particularly impressed with the level of effort and interest among doctors to learn about urological conditions and cancers from patients’ experiences. Physicians who participated also expressed appreciation and admiration for the patients willing to share their perspectives. What was impressive about the conversations held was the fact that everyone brought a unique set of experiences and knowledge to the open dialogue. We firmly believe that through talking about the impact from diagnosis through treatment for the many urological conditions that exist, we will together elevate awareness of the patient experience and be able to share and even develop new resources that will help lessen unmet needs.

Indeed, there were many takeaways of how we can together further advance key communication. Both audience participation and speakers fully contributed to robust sessions. From the discussion segments, physicians participated in many ways. One urologist sought input on how to improve communication with patients when addressing serious health diagnoses; another highlighted how their team of providers have incorporated patient input to process improvements; and yet another physician shared their own cancer diagnosis and associated insights about compassionate care and the benefits of advocacy.

Among the panel speakers across both days, the common denominators were hope and inspiration. Each person leveraged their lived experiences to make a difference, as exemplified by their participation in the PPP. To highlight a few examples, providers and patients were encouraged to build fitness into their care routine. Specifically, Scott Eriksson presented, “Patient Success: Bladder Cancer Treatment, World Championship Gold, and Exercise Anyone Can Do!” Mr Eriksson called to attention that it has been shown that physical fitness is a huge factor in cancer recovery. Exercise has not only been demonstrated to increase cancer survivors’ well-being, but it has also proven to be one of the most useful treatments for cancer-related side effects, including fatigue.

With a focus on patient-centered care, Tracie L. Titus, MHA, PMP, presented her talk on “Shared Decision Making in Patients Diagnosed With Bilateral, Multifocal Renal Cell Carcinoma.” The message here was also clear—if you sense something is not right, get a second opinion. Physicians in the audience echoed this sentiment as well as other key points from the talk, including that shared decision-making is essential; that individuals should be made aware of all treatment options and the associated risks; and that there should be a discussion about what the patient’s life will look like once treatment is over.

A further example of patient-centered care was shared in Tom Hulsey’s talk where he highlighted that it involves aspects of treatment that extend beyond simply addressing prostate cancer itself. It is essential that intervention includes tending to the patient’s mental, psychological, and social health. Without such, there is a lack of preparedness for the physical changes that accompanied treatment as prostate cancer is not just about the disease, it is a cancer of sexuality, confidence, relationships, mental health, career, and finances.

As participants, we had personal takeaways as well. It was very rewarding to collaborate with the AUA to bring the PPP to life. We further admired elevation of the PPP by including us through AUATV interviews featured during the conference. And, for Tom, it was a great pleasure to attend the Prostate Cancer Foundation (PCF)–UroToday dinner reception. The most enlightening part was meeting the dedicated PCF team who are just as passionate about conquering this cancer as are those who have or have had the disease.

Together, we are encouraged about future continued engagement between the AUA and their advocacy partners. Feedback received for future PPPs at the annual meeting include a more central location for the panel sessions, incorporation of urologists and patients presenting together, and certainly maintaining the discussion segments between presentations as they lead to fruitful insights and meaningful learnings. We enthusiastically look forward to AUA2024 in San Antonio, Texas, and wholeheartedly invite you to join in the next rounds of PPP sessions.