Development of a radiation oncology-specific prospective data registry for clinical research and quality improvement: A clinical workflow-based solution.

Abstract

197 Background: The computerized ‘paperless’ medical recording system has transformed the modern health information system and serves as an idea platform for cancer registry development, particularly in a specialty like radiation oncology, where technological advances generate unprecedented amounts of data. Methods: From May 2011 to May 2015, physicians prospectively inputted data on patients seen during consultation in the Department of Radiation Oncology at UCLA. Using a customized interface established between an in-house registry and a commercially-available, hospital-based electronic medical record system (Epic Systems, Inc. Verona, WI), a parcel was created for data deposition, which was also linked to the Aria Treatment Planning Station (Varian Medical Systems, Inc., Palo Alto, CA). This registry was designed to assimilate into routine physician work-flow and was based on the completion of tabular entries, which were templated by disease sites. The total number of data fields per disease site ranged from 9 to 73 (median, 21). Results: A total of 7,646 patients were logged into the registry. Primary disease sites were prostate (N = 1,247), breast (N = 1157), head/neck (N = 726), central nervous system (N = 638), lung (N = 439), brain metastasis (N = 349), gastrointestinal (N = 238), gynecologic (N = 234), other (N = 2,618). The mean data capture completion rate by physicians was 55% (range, 32 to 65%); however, this rate did not differentiate between true incomplete (data available but not collected), versus data that was either unavailable, not required, or not applicable. A total of 46 independent, investigator-initiated research studies have been undertaken using queries supported by the registry from multiple access points, 8 of which were published in peer-reviewed journals. Conclusions: The development of a radiation oncology-specific registry not only enhanced research efficiency and facilitated quality assurance, but also fostered data reuse and promoted self-education by producing quality information to guide clinical practice. Our next steps include the integration of patient-reported outcomes through radiation oncology-specific surverys, the documentation of cost of delivery of care of specific treatment pathways, and the implementation of data collection processes in the community.