Multistakeholder Engagement in PCORnet, the National Patient-Centered Clinical Research Network

OVERVIEW The Patient-Centered Outcomes Research Institute (PCORI) was established to fund research that helps people make more informed health care decisions and improves the delivery of care by producing evidence-based information. PCORI-funded research is guided by patients, caregivers, and the health care community; at the core of PCORI’s mission is a commitment to meaningful multistakeholder engagement at all stages of the research process. The purpose of this article is to describe PCORI’s research network and the critical role that multistakeholder engagement plays. To fulfill its mandate for advancing the Nation’s capacity to conduct patient-centered outcomes research (PCOR), PCORI-funded PCORnet, the National Patient-Centered Clinical Research Network. Since its inception in 2014, PCORnet has worked to build a resource that can meet an urgent need—to conduct PCOR faster, more efficiently, and at a lower cost.1 By leveraging the power of previously collected health data and unique partnerships with patients, clinicians, and delivery systems, PCORnet aims to conduct highly relevant clinical research by creating a Network of networks that engages these health care stakeholders in the development, execution, and dissemination of clinical research. PCORnet is comprised of partner networks—Clinical Data Research Networks (CDRNs), Patient-Powered Research Networks (PPRNs), and a more recent addition of Health Plan Research Networks (HPRNs). The CDRNs are centered within care delivery systems, ranging from academic medical centers to integrated delivery systems, federally qualified health centers, and other community-based clinical networks that collect electronic health information at the point of care. The CDRNs include entire populations that receive some or all of their health care at participating systems. CDRNs draw patients from specific geographic regions, most covering multiple states and diverse patient populations. The PPRNs are organizations operated and governed by groups of patients, caregivers, and community members, with a shared interest in driving research to better serve their communities and improve health outcomes; they include organizations dedicated to both common and rare diseases, families and caregivers of persons living with a disease, and communities not traditionally included in research. Two of the PPRNs are focused on vulnerable or underserved populations that are not defined by specific conditions. Across the community-based and condition-specific PPRNs, these networks involve patients, caregivers, and community members interested in participating in clinical research and in the governance of research activities. The HPRNs are led by the research arms of 2 of the country’s largest private health plans and are working to facilitate the inclusion of claims data in PCORnet-based research to support the Network’s efforts to achieve more complete, longitudinal data and to incorporate the perspectives and interests of payers in PCORnet’s work. In addition to the technical linkage work, these HPRNs are actively engaged in data and research governance activities within PCORnet. The goals of PCORnet are to support a range of study designs, including large longitudinal observational studies, pragmatic clinical trials conducted within participating delivery systems, and rapidcycle research such as exploratory prevalence and surveillance studies. It is envisioned that PCORnet