PCORnet®, the National Patient-Centered Clinical Research Network, aims to transform clinical research and make it more patient centered, efficient, sustainable, and poised to answer important research questions at a national scale. In its role as the convening center for the PCORnet® Coordinating Center, this Phase 3 Coordinating Center for PCORnet will build a collaboration to support PCORnet as a learning health system that serves as a national resource for research that maintains the patient at the center, leverages the secure data assets within the network, and achieves the mission of PCORnet to revolutionize clinical research and improve health care and outcomes.
Central to the success of PCORnet are trusted relationships among its partners, as well as a collaborative governance structure that supports shared decision making and incorporates the diversity of experience and perspective that make PCORnet unique. Importantly, PCORnet will continue to promote the voice of patient partners within the network by requiring their equal voice in governance, promoting meaningful participation and leadership of committees and workgroups, and ensuring research projects within PCORnet include patients and other stakeholders in impactful ways early and throughout the project. This Phase 3 Coordinating Center for PCORnet remains committed to continuing to elevate the voice of patient partners and to supporting change within the research paradigm.
A key goal for PCORnet is to answer important clinical questions, especially those focused on PCORI’s stated strategic priorities. The Coordinating Center will continue its efforts to identify important, patient-centered research questions and work to design pragmatic projects that leverage the PCORnet infrastructure. To date, the Coordinating Center has led national-scale projects to address PCORI priority areas, including ADAPTABLE, PREVENTABLE, and studies related to COVID-19 and its prevention and treatment (HERO and ACTIV). It will continue to support the network to be responsive to these and future priority areas.
The center will serve as the convening Coordinating Center across all functions of PCORnet and develop and support its governance, research operations, and quality improvement reporting and initiatives in support of a unified team that supports the continued evolution of the network. It is committed to the core principles of PCORnet and its shared mission to make research more patient centric, informed by real-world data, efficient, and ultimately able to definitively answer pressing research questions at national scale.
PCORI funds patient-centered CER that focuses on outcomes that matter most to patients, their caregivers and their families. The goal of this Innovation Project is to advance PCORI’s National Priorities for Health by enhancing data science and informatics capabilities of the PCORnet data infrastructure, including enhancing data capacity and open science to accelerate progress toward an integrated learning health system and expanding the use of PCORnet for patient-centered CER. The project is designed to support PCORI’s goal to increase the capacity and efficiency of PCORnet to support patient-centered CER and PCORnet® Studies. PCORnet® Studies are national scale studies that include two or more Clinical Research Networks participating in PCORnet and patient-partnership.
The project is focused on identifying scalable, reusable informatics solutions and innovations for the PCORnet infrastructure to improve the conduct of patient-centered CER by:
Developing a set of short-term recommendations and draft implementation plan for data, query and knowledge infrastructure enhancements in Phase 3 of PCORnet to improve the efficiency and quality of data services to support patient-centered CER using PCORnet.
Developing recommendations for a five-year strategic roadmap outlining opportunities and implementation timelines to optimize the PCORnet data and knowledge infrastructure to support patient-centered CER aligned with PCORI’s National Priorities for Health.