Development of a Radiation Oncology–Specific Prospective Data Registry for Research and Quality Improvement: A Clinical Workflow-Based Solution

Abstract

Purpose The computerized paperless medical recording system has transformed the modern health information system and serves as an idea platform for registry development, particularly in a specialty such as radiation oncology, where technologic advances continue to generate unprecedented amounts of complex data. We present our single-institution experience with the development of a real-time observational registry fully integrated into the process of routine clinical workflow and show how this has the potential to transform research and quality assurance. Materials and Methods From May 2011 to May 2016, physicians prospectively inputted data during the process of routine charting on patients seen in clinic. Using a customized interface established between an in-house registry and a commercially available, hospital-based electronic medical record system (Epic Systems, Verona, WI), a departmentally based parser was created for automatic data deposition, which was also linked to the Aria Treatment Planning Station (Varian Medical Systems, Palo Alto, CA). The total number of data fields embedded per disease site ranged from nine to 73 (median, 21 fields). Results A total of 12,341 patients were logged into the registry, of whom 6,911 completed a course of radiation therapy. Primary disease sites were prostate (n = 2,340), breast (n = 2,159), head or neck (n = 1,426), primary CNS (n = 1,338), lung (n = 749), brain metastasis (n = 739), GI (n = 638), gynecologic (n = 534), and other or benign (n = 3,618). A total of 54 independent, investigator-initiated research studies have been initiated using queries supported by the registry from multiple access points, of which 23 were published in peer-reviewed journals. Conclusion The development of a radiation oncology–specific registry enhanced research efficiency and facilitated quality assurance by producing clear and quality information to guide clinical practice.