The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit, nongovernmental organization authorized under the Affordable Care Act of 2010 to help close gaps in research evidence that are needed to optimize patient and clinician decisionmaking and improve health outcomes. To enhance the nation's capacity to conduct comparative effectiveness research, PCORI has invested more than $100 million in the development of PCORnet, the National Patient-Centered Clinical Research Network. The centerpiece of the PCORnet initiative is a distributed research network that combines clinical data from electronic health records (EHRs) and data contributed directly by patients from participating networks located throughout the United States. A distributed network allows a spectrum of analyses to be conducted without the physical pooling of data, which remain behind the protection of each institution's firewalls.
Phase I of PCORnet's development was dedicated to building its governance, technical, and research infrastructure. This report describes the findings of a formative evaluation of PCORnet's Phase I activities and addresses PCORnet's readiness to conduct research in Phase II. PCORnet made substantial progress during its initial phase of development and operations including standardizing vast amounts of EHR data, developing database querying capabilities, and implementing streamlined institutional review board processes. However, many challenges remain. The degree to which PCORnet's governance structure can effectively guide the network during its research phase, and the extent to which PCORnet can obtain claims data to supplement EHR data and develop compelling use cases for potential funders will determine the network's future success.
Table of Contents
PCORnet’s Foundations, Goals, and Participants
Developing and Implementing PCORnet’s Governance Infrastructure
Developing PCORnet’s Data Infrastructure
Developing PCORnet’s Research Infrastructure
Developing a Culture of Collaboration
Engaging Stakeholders in PCORnet