Patient engagement in the design and execution of urologic oncology research

Abstract

Introduction: There have been significant effort and financial support to engage patients in the design and execution of medical research. However, little is known about the relative benefits or potential impact of involving patients in research, most efficient practices and systems to enhance their involvement, and potential barriers and challenges that are involved with engaging patients. In this review, we will discuss the value of patient centered research, review the challenges that many of these studies faced, and highlight potential future opportunities to enhance patient involvement in urologic research.

Methods: An English-language literature search was performed in the electronic databases of Medline (PubMed), EMBASE, Web of Science, Google Scholar, the Cochrane Library, and on the Patient Centered Outcomes Research Institute (PCORI) website. Search items included "patient-centered research," "patient-reported outcomes" and "patient engagement" in various combinations. Although PCORI has funded almost 600 projects with $1.6 billion to improve patient centered research, the search revealed 3 studies of patient engagement in the development, management, and execution of urologic oncology research.

Results: Patient engagement in the design and execution of medical research can help align research topics to match patient priorities, improve survey and data collection tools, increase patient recruitment and participation in studies, and improve accessibility and dissemination of clinically relevant results from medical research. However, engagement patients in research requires significant investment of time, financial support, and energy from the patients, stakeholders, and researchers to provide mutual benefit. In the three studies in urologic oncology that involved patients, the patients provided a significant impact on the structure of the studies and helped improve the ability of patients to apply the results from the research studies.

Conclusions: The benefits to involving patients in research to improve the access, understanding, and application of clinical evidence can be significant. Patient engagement in urologic oncology research is limited currently, but is expected to grow as the funding agencies incentivize the practice and the culture shifts toward a greater emphasis on patient centered outcomes.

Keywords: Patient engagement; Patient-centered outcomes; Patient-reported outcomes.