Development and Experience with Cancer Risk Prediction Models Using Federated Databases and Electronic Health Records

Early diagnosis is critical to improving survival rates of lethal cancers, such as pancreatic duct adenocarcinoma (PDAC). However, there are no reliable screening test for these cancers. In this chapter, we present potential methods for predicting early, evolving cancers by leveraging readily available electronic health record (EHR) data and machine learning. We discuss the various aspects of our collaborative experience, involving clinical and computer scientists, in navigating the process of using EHRs to develop cancer risk prediction models. This chapter is intended to serve as a guide to others preforming this type of research. We cover the different steps involved, based on our initial experience of model development using single-institution data, including data acquisition, querying and downloading data, protecting patient confidentiality, data curation, model development, and validation. Challenges encountered when using single-institution data is presented, along with lessons learned. Drawing from our experience working with a federated database of EHR data from multiple institutions to develop a risk prediction model for PDAC, we also discuss how many of these challenges can be addressed by using such a federated database of EHR data. We also discuss future clinical opportunities that may arise from leveraging data from a federated network, such as the deployment of risk models for clinical studies.