Paul Fearn

The advancement of cancer research, patient care and public health currently rely on acquisition of data from a variety of sources, information-processing activities, and timely access to data that is of acceptable quality for investigators, clinicians and health officials. With cancer patients living longer and undergoing multiple rounds of treatment, as well as the rise of molecular data that characterize individual patient tumors, there are challenges across all aspect of cancer data collection, integration and delivery. Although there have been advances in deployment of electronic medical records (EMRs) and use of data from EMRs and related systems to support cancer research and patient care, most data needs are still met through costly project specific manual abstraction and project specific databases.

This dissertation builds on my previous work on the Caisis cancer research database at Memorial Sloan-Kettering Cancer Center, and my assessment of trends in information technology (IT) and informatics through site visits and interviews at 60 cancer centers. My hypothesis for this dissertation was that new tools and methods from biomedical informatics could improve the availability of data for cancer research if they were applied thoughtfully and strategically. Within the context of experimenting with the application of selected informatics tools and methods in a cancer center, my overarching research question was: how can we improve access to clinical and related data about cancer patients for research?