When confronting a frightening condition like bladder cancer, patients may fall into a rabbit hole of information online. It can be challenging to discern what sites to trust and where to turn. Not only are patients facing concerns about their own survival, but also worries over sensitive issues such as bladder function and sexual health. In this situation, it can be difficult for patients to open up to providers about their fears.
To help patients advocate for themselves and to help providers better understand the real-world challenges their patients are facing, the Bladder Cancer Advocacy Network (BCAN) partnered with PlatformQ Health to produce tethered education. This unique learning model is built expressly to address knowledge and communication gaps between patients and their health care providers.
Tethered education provides multiple benefits to providers, including the opportunity to learn new team-based strategies to improve clinical practice, better understand patient priorities, challenges and perceptions, and employ strategies to address patient/caregiver challenges more effectively. For patients, tethered education is quite empowering – making it possible to learn new strategies to better communicate with their care team, advocate for their care, find tangible resources, and take actionable steps to better manage their condition.
Bringing together multiple specialties
As the premier national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease, BCAN has an in-depth understanding of the hurdles that patients face. BCAN Board Member and Medical Director for the Carolina Urologic Research Center, Neal D. Shore, MD, FACS was the ideal key opinion leader to moderate the tethered education sessions. Dr. Shore has conducted more than 350 clinical trials, focusing primarily on genitourinary oncology. As an advocate for multidisciplinary care for this complex disease, he is keen to educate providers, including urologists, urologic surgeons, oncologists, primary care physicians, oncology nurses, urology nurses, social workers, and physical therapists.
Aligning patient and provider education
Together, BCAN and PlatformQ Health created an education model with aligned themes for patients and providers. Our online learning platform made it possible to use interactive polling to gather data during the patient education session, which informed the CME session held the following month. During the CME session, expert faculty, including Dr. Shore, highlighted the collected patient data and discussed strategies to address patient challenges. Within this format, elucidating insights from real-world patients acts as a precursor to transformative patient-centered care through insights and open dialogue.
Bridging the disconnect between patients and providers
In the patient education session, “Taking Control of Bladder Cancer Management,” Dr. Shore and BCAN Director of Education and Advocacy Stephanie Chisolm, PhD, led a discussion about the different types of bladder cancer, how the healthcare team differs by type, surgical and non-surgical treatment, the treatment experience, maintaining quality of life, what to expect with follow-up, and managing recurrence. Additionally, a patient with bladder cancer was on the panel to share her experiences.
There were 15,193 total patient and caregiver engagements in the session. Throughout the session, polling answers and open-ended comments were gathered to understand not only patients’ knowledge of the disease but the key issues and worries they had. The online learning platform gave patients a way to share candid feedback that they might not feel comfortable discussing face to face with their provider. This revealing data was then shared in the CME session held the following month.
More than 775 providers joined the session, “When Initial Therapy Fails: What’s Next in Urothelial Carcinoma.” There was a notable gap in perceptions between patients and providers. 78% of HCPs did not recognize the greatest quality of life challenges their patients face, which patients reported as ‘the inability to conduct their daily activities’. In addition, only 22% of HCPs felt patients’ top concerns were urinary function, while 42% of patients reported the same. Notably, 11% of clinicians reported that patients experienced depression and anxiety, while 35% of patients reported having these issues.
By having an open dialogue about information patients shared in the session, providers can improve their competency of care and empathy for patients. Following the CME session, 84% of providers reported an improvement in medical or practice knowledge and 77% reported improved clinical outcomes.
The sharing of real-world patient insights with providers has the potential to improve health outcomes and patients’ experience. These learnings can help providers ask the right questions and potentially intervene earlier to support patients through the myriad quality of life challenges with the disease. Additionally, identifying gaps between patient and provider perceptions can provide useful learnings to improve upon future educational initiatives.
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