Groundbreaking abstracts spotlight patient perspectives

Patients are more than bystanders, they are key players.

Phillip M. Pierorazio, MD, and Geolani W. Dy, MD
Phillip M. Pierorazio, MD, and Geolani W. Dy, MD

Everything that urologists and their staff do, every medical exam, test, diagnosis, treatment, procedure and follow-up, depends on patients. Do you know what really matters to the most important stakeholders in your practice?

“Our whole job, our whole existence, is dependent on patients, on caring for patients,” said Phillip M. Pierorazio, MD, chief of urology at Penn Presbyterian Medical Center at the University of Pennsylvania in Philadelphia. “Like most things in health care, the data have lagged behind clinical practice. Giving patients a formal voice is an important part of the care process.” 

It’s not that patient perspectives are completely ignored. Instruments such as the AUA Symptom Score have been used to assess benign prostatic hyperplasia symptoms and quality of life for decades. But these familiar instruments were designed by clinicians, for clinicians. Patients are more than bystanders—they are key players. 

“As clinicians, we have a very specific perspective on the conditions we treat and the experiences of the patients we treat,” said Geolani W. Dy, MD, assistant professor of urology at Oregon Health & Science University in Portland. 

“There is a whole world of patient perspectives that are very relevant to the care we are providing that are being inadequately captured through traditional research mechanisms. In my field, gender-affirming care, there are a number of power dynamics and historical norms that have potentially harmed patients. This kind of patient-perspective research, conducted by and presented by patients, is an opportunity to deconstruct and reconfigure our understanding and approaches to improve clinical and quality of life outcomes.” 

The AUA is putting patient perspectives front and center during “Patient Perspectives Abstracts," which took place on Friday. This session may be the first by any major medical association devoted solely to patient perspective abstracts researched by and presented by patients to clinicians. 

The AUA solicited abstracts from multiple patient groups and received more than 50 submissions. Patient-authors presented a dozen abstracts, from the role that uncertainty in the diagnosis of renal masses plays in overtreatment as well as in patient anxiety and lack of confidence in medical care post-surgery to the unmet needs of adults with bladder exstrophy, underutilization of pelvic floor physical therapy in treating chronic pelvic floor dysfunction and vulvovaginal conditions, the impact of peer-led support in prostate cancer, the experiences of patients in prostate cancer trials, patient-based education in endometriosis and more. 

“The patient view is a fresh, underrepresented perspective,” Dr. Dy said. “These abstracts should inspire clinicians and researchers to think more about the perspectives that they aren’t incorporating. We can better partner with patients and the broader patient community to improve clinical care and research.” 

The session answered the often unspoken questions about why patient perspectives are important. 

“Just the fact that we are having this session puts the patient perspective on people’s radars and reaffirms that it is important to the AUA, important to clinicians,” Dr. Pierorazio said. “There aren’t many times you get to say, ‘I was there at the first session of this kind.’ Being there, acknowledging that our patients’ voices are important, sends a powerful message as an organization and as a urologist. We are united with our patients, we value their opinions, we value who they are and we want to work with them.” 

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