An Internet-based Data System for Outcomes Research Conducted by
the National Comprehensive Cancer Network
Joyce C. Niland, Ph.D.,
City of Hope National Medical Center, Duarte, California, USA
The National Comprehensive Cancer Network (NCCN) is conducting the first national shared outcomes study to determine the patterns of care within United States Cancer Centers. The Data Coordinating Center for this study is City of Hope National Medical Center. An Internet-based outcomes database system has been developed at City of Hope for this project, beginning over 4 years ago. First deployed within 5 NCCN centers in 1997, today 11 Cancer Centers are entering data via the Internet for this national shared outcomes research project. The first cancer site selected for data collection was breast cancer, and the database contains over 100,000 records representing more than 5000 women treated at NCCN institutions.
The NCCN database system allows the flexibility of entering data directly via the Web-based screens, or sending electronic files to City of Hope via the File Transfer Protocol (FTP). Over the past year several major system enhancements have been made, including: on-line posting of quality assurance checks, automatic display of sub-item menus, user password maintenance, and Java applets to "pre-scrub" FTP file formats to ensure compatibility with the central database. An on-line patient scheduler recently has been added to enhance functionality.
The database system has been extended to capture outcomes data on the next cancer site to be studied, non-Hodgkins Lymphoma (NHL). Because of the flexible architecture of the database model, additional disease sites can be added with relative ease. The expansion to include additional disease sites and bring more cancer centers on-line is proceeding smoothly, with extensive training and quality control checks being implemented at all levels.
The NCCN outcomes database is proving to yield extremely valuable data to measure and improve even further the high quality of cancer care within our nation's Cancer Centers. The initial set of analyses of the pooled breast cancer outcome data will be shared in this presentation, along with the results of a survey conducted to assess the database system functionality. Partnerships with community oncology practices are being implemented to expand our ability to measure cancer care across many different cancer treatment environments.