The Journal of Urology 2022 LECTURE Engaging Patients: A Challenge to Our Care Delivery and Research Priorities

By: Angela B. Smith, MD, MS | Posted on: 01 May 2022

It wasn’t long ago when I selected my research projects from observations made within the clinic, perusal of journals and discussions with colleagues. While these methods remain important, many years would pass before I realized that a critically important perspective was glaringly missing. That missing perspective would be from the ultimate stakeholder who benefits from our research: the patient. Our traditional research framework has largely relied on investigators to identify priorities, formulate research questions, and design and conduct clinical studies, but this framework has resulted in overlooked priorities and outcomes, unsuccessful trial recruitment and failed dissemination of results in the clinic. To address these deficiencies, patient-centered research aims to incorporate meaningful engagement with patients throughout the research process, from formulating research questions and informing study design to identifying outcomes and developing timing of assessments.1 In this year’s Journal of Urology® Lecture, we will discuss the importance of engaging patients in urological research priorities and clinical care delivery, and identify strategies to do so effectively.

In an era filled with funding cuts, disillusioned academic researchers and staffing concerns, we must be critical, thoughtful and exacting with the research we choose to conduct—and the way in which we conduct it. Clear and purposeful research agendas can be realized through effective patient engagement, which provides laser focus into existing research gaps and best practices to answer research questions. Engaging patients in the research process is a (relatively) new process, but can be achieved through many avenues. On a larger scale, engagement infrastructure can produce valuable results with long-term sustainability. Several successful urological initiatives have led to patient registries which can be used to prioritize research agendas, empower patient partners to join research teams and support large grant proposals. Examples include TRANS-ARC (Transgender and Non-Binary–Allied Research Collective) led by Dr. Geolani Dy,2 PKIDS (Pediatric KIDney Stone Care Improvement Network) led by Drs. Gregory Tasian and Jonathan Ellison,3 and BCAN PSN (Bladder Cancer Advocacy Network Patient Survey Network) that I co-lead with Dr. John Gore.4,5 These research collectives have stimulated patient-centered research agendas and led to the design and funding of large pragmatic trials that address critical gaps in clinical care.

Although patient engagement infrastructure can stimulate large-scale projects over time, such large-scale initiatives are not required for successful patient engagement in research. In individual studies and clinical trials, engaging patient partners by utilizing existing patient engagement frameworks can produce patient-centered design with equally meaningful results.6 Many institutions and organizations have trained patient partners who are willing to participate as members of the research team. Including funding for patients’ participation can further increase diversity and perspective that lead to diversity in recruitment and more generalizable results.

Engaging patients in research agendas and study conduct leads naturally to patient engagement in the clinical setting, where results from patient-centered research studies are applied through shared decision making (SDM). SDM represents the pinnacle of patient-centered care and can be augmented using patient-reported outcomes (PROs)—outcomes that come directly from the patient without interpretation or amendment by the health care professional.7 By concisely defining symptoms of greatest concern to the patient, PROs engage patients, facilitate discussion, tailor treatments and track symptoms. However, challenges exist in efficient delivery of PROs, requiring us to assess and optimize feasibility in the busy clinical setting.

Undoubtedly, effective patient engagement in both the research and clinical settings have myriad benefits, and we are only scratching the surface. Over a decade ago, a seminal report from the Institute of Medicine, Crossing the Quality Chasm,8 called for health care redesign by recognizing that patients control their health care decisions and should be afforded knowledge and information to enable personalized decisions based on their preferences and values.7 Two decades later and we are finally seeing a glimpse of what this redesign could be through patient engagement, both in the clinical and research realms. One thing is certain: patient engagement is an important and necessary disruptor of the status quo and will be an important catalyst for elevating the quality of care we deliver to our patients in the future.

  1. Smith AB, Lee JR, Lawrence SO et al: Patient and public involvement in the design and conduct of a large, pragmatic observational trial to investigate recurrent, high-risk non-muscle-invasive bladder cancer. Cancer 2022; 128: 103.
  2. TRANS-ARC: Transgender & Non-Binary Surgery Allied Research Collective. Available at https://trans-arc.org/. Accessed February 24, 2022.
  3. PEDSnet: PKIDS: Pediatric KIDney Stone Care Improvement Network. Available at https://pedsnet.org/pkids/. Accessed February 24, 2022.
  4. Hamad J, Gore J, Chisolm S et al: Patient empowerment through engagement in bladder cancer research. Urol Oncol 2021; 39: 193 e13.
  5. Smith AB, Chisolm S, Deal A et al: Patient-centered prioritization of bladder cancer research. Cancer 2018; 124: 3136.
  6. Sofolahan-Oladeinde Y, Newhouse RP, Lavallee DC et al: Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: the first three steps. Fam Pract 2017; 34: 272.
  7. Lavallee DC, Chenok KE, Love RM et al: Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Aff (Millwood) 2016; 35: 575.
  8. Institute of Medicine: Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press 2001; https://doi.org/10.17226/10027.
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