Answering Research Questions with National Clinical Research Networks

Abstract

In recent years, the healthcare community has recognized that our current clinical research system, for all of the great advances it produces, is in need of improvement. Research—especially large clinical trials—is currently not only expensive, but also slow in both the setup and conduct of a study. Expanding the nation’s capacity to conduct clinical studies quickly and economically requires new infrastructure that takes advantage of data gathered in clinics, hospitals, and other sites where patients receive care—as well as patient registries. PCORnet, the National Patient-Centered Clinical Research Network, works with patients, clinicians, health systems leaders, informaticians, and clinical researchers to connect 29 individual networks of patients and healthcare systems into a large interoperable, secure national network that turns millions of patient encounters into valuable data points. This chapter includes a case study of the Patient-centered SCAlable National Network for Effectiveness Research (pSCANNER), a stakeholder-governed, distributed clinical data research network that is part of PCORnet. pSCANNER leverages data from its clinical sites—over 30 million patients in all 50 states—for comparative effectiveness and patient-centered outcomes research to improve care of conditions such as obesity, heart failure, and Kawasaki disease. Implications for nursing research and practice are also offered.