Every spring, the Urology Care Foundation hosts its own ‘Patient Advocacy Hub’ to generate conversations and dialogue around some of the key issues in urology. Taking place at the American Urological Association (AUA) Annual Meeting, the Hub is seen by urological experts and healthcare providers attending the conference.
This year, the Hub made its return at the 112th AUA Annual Meeting, held in Boston, MA, May 12–14. However, unlike previous years, the Hub returned in a slightly different shape with the schedule split into six distinct areas of interest: prostate, kidney, bladder, sexual, men’s health and women’s health. Each of the 17 patient advocacy organizations participating could select which streams they wanted to participate in and, during their ‘theme hour’, were able to have feature presentations, invite a guest speaker to present a topic or share their legislative priorities to drive a unified agenda.
With its new schedule came a new physical format. Gone were the designated ‘lemonade stands’ for each patient advocacy group and in their place was an open, more interactive and less formal seating area which aimed to promote discussion between patient advocacy organizations and the physician attendees.
“The new design helped bring all of our attendees together and create conversations,” explained Jessica Bateman, Patient and Research Advocacy Manager, AUA. “Many physicians aren’t aware of the resources that these groups provide. In reality, patient advocacy organizations can make physicians’ lives so much easier through the resources they have available and the work they do for urologic patients. As many advocacy representatives are also patients themselves, it puts into perspective what it’s like to live with a urologic condition and the true value that new treatments can have on patient quality of life.”
The first day of the Hub was dedicated to meet and greet sessions – hour-long slots devoted to networking between participating patient advocacy groups and experts in their related field. Then, at midday, a special panel session hosted by Action to Cure Kidney Cancer and the Kidney Cancer Research Alliance (KCCure) featured leading kidney care experts in the field to discuss guidelines for treating kidney cancer. The day came to a close with a two-hour special networking event offering patient advocates the opportunity to directly talk to 25 AUA physicians.
The second day featured two Q&A sessions on the topic of sexual health, jointly hosted by the Association for Pelvic Organ Prolapse Support, FrankTalk, Men’s Health Network and ZERO – The End of Prostate Cancer. Alongside the sessions were presentations delivered by selected patient advocacy organizations and, ending the day, an Advocacy Hub first: a 50-minute rare disease feature presentation on the subject of bladder exstrophy given by the Association for the Bladder Exstrophy Community.
The final day opened with an Astellas-sponsored advocacy breakfast, hosting patient advocacy organizations to hear talks exploring the key questions as to how patient care can be optimized. Included were Thomas Valuck, partner at Discern Health, Ekene Enemchukwu, pelvic reconstructive surgeon and Cheryl Stein, an overactive-bladder patient. The day was then dedicated to the final set of presentations.
Among the many issues discussed throughout the three days, key topics included the growing concept of patient-centricity, the empowerment of patients to start dialogue with their doctors, shared decision making and addressing the stigma related to urological conditions.
All in all, this year’s Advocacy Hub presented a unique opportunity to continue to fill the gap between patient advocacy groups and healthcare professionals in the field, according to Bateman. “This really was a fantastic chance for patient advocates to showcase their resources to people who traditionally find it hard to access information, share their advocacy efforts and build collaborative relationships.”