SUO 2015 Putting the “PATIENT” into Patient-centered Outcomes Research Prioritization - Session Highlights

Washington, DC USA ( In this session, Dr. Angela Smith channeled former National Coordinator for Health Information Technology at the U.S. Department of Health and Human Services, Farzad Mostashari, noted “patient engagement is the blockbuster drug of the century.” Patient-centered outcomes (PCO) are comprised of four basic tenants: understanding outcomes that matter to patients, considering the benefits versus harms of therapy, including diverse patient populations, and incorporating multiple stakeholder opinions.  

Dr. Smith expanded on this concept by defining patient-centered care as involvement of patients throughout the research process from inception to conclusion.  “There needs to be a distinction between research on patients and research with patients.”

To this end, she has partnered with the bladder cancer advocacy network (BCAN) to engage patients in research quality prioritization.   Patients with bladder cancer were recruited to participate in the Patient Survey Network (PSN).  Over six hundred fifty patients have signed up.  Next, multiple stakeholders (i.e. patient advocates, industry members, payers, and physicians) were asked to generate a list and rank the top research questions in non-muscle invasive bladder cancer (NMIBC – reducing cystoscopy discomfort), muscle-invasive bladder cancer (MIBC – QOL for patients with bladder sparing procedures versus radical cystectomy), and metastatic bladder cancer (MBC – survival and QOL for different chemotherapy regimens).  These questions were sent back to the patients recruited to the PSN for validation.  Dr. Smith has found that using this approach generates many questions that providers alone might not have considered, but that are important to patients.

Patient engagement is paramount to improving care.  Dr. Smith offered a three-pronged approach to serve as a guideline in this regard. First, level the playing field; invite patients to interview, introduce them during stakeholder meetings, create norms and principles for these meetings (e.g. avoid jargon), and engage in guided story telling.  Second, create community; avoid having only one patient in stakeholder meetings, respectfully prompt patients to share real-life experiences, and share examples of how such patient experiences have added value to research in a given disease entity.  Third, believe in the process by providing feedback to participants and disseminating findings to the research community.

She closed by concluding that patient engagement is the foundation of PCO research and noting that there are many opportunities for such work within the urologic oncology community.

Presented By:

Angela S. Smith, MD

University of North Carolina

 Written By:

Benjamin T. Ristau, MD. from the 2015 Winter Meeting of the Society of Urologic Oncology (SUO) "Defining Excellence in Urologic Oncology" - December 2 - 4  Washington, DC USA. 

Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA