An Ecosystem for Making Patient-Centered Research More Efficient

PCORI funded the development of PCORnet®, The National Patient-Centered Clinical Research Network, to address an urgent national need—capacity to conduct patient-centered outcomes research faster, more efficiently, and at lower cost, by leveraging the power of health data, reusable research infrastructure, and unique patient partnerships.

PCORnet addresses several challenges of traditional clinical research, including the time and expense involved in developing a study, the lack of data on certain rare conditions or underserved populations, and the recognition that many studies don’t answer the questions most important to patients. All these issues can lead to study results that are of limited use to patients and others across the healthcare community.

The Evolution of PCORnet

PCORnet's development began in December 2013 when PCORI’s Board of Governors approved funding for an initial group of 29 partner networks, both health system–based Clinical Research Networks (CRNs) and patient-initiated Patient-Powered Research Networks (PPRNs). PCORnet's first phase of development lasted 18 months.

A second phase involving 13 CRNs, 20 PPRNs, and two Health Plan Research Networks (HPRNs) operated from the fall of 2015 through late 2018. In its current iteration, PCORnet includes nine CRNs, two HPRNs, and a coordinating center.

Stakeholder Partnerships

PCORI has funded health plans and other stakeholders to partner with PCORnet to fill significant evidence gaps in comparative effectiveness research:

These initiatives explore research opportunities that leverage data linkage and other technical activities, build partnerships with patients and other stakeholders, and ultimately support improved patient decision making and care.

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An infographic showing the accomplishments of PCORnet, the PCORI-created health data platform designed to make clinical research more efficient and less expensive. PCORnet represents more than 68 million patients who have had a medical encounter in the pa"

Research

Rapid-Cycle Research Studies and Projects

PCORI is funding several rapid-cycle research studies and projects using PCORnet’s infrastructure to support rapid generation of evidence on stakeholder-prioritized queries.

Demonstration Research Studies

PCORI funded several demonstration studies to answer important questions while testing the technical capacity and function of PCORnet’s infrastructure:

Learning Healthcare Systems

The Learning Healthcare System Networks Project (previously called the People-Centered Communities) is developing four pilots based on Cincinnati Children's Hospital Medical Center's successful learning network model. The model supports communities of people, clinicians, and institutions to improve health outcomes through quality improvement and robust research. Read more about it.

Patient-Centered Approach

PCORnet is a "network of networks" that brings together patients, clinicians, researchers, health plans, and healthcare systems to share information and participate in research.

PCORnet embodies PCORI’s patient-centered, engaged approach to research. The network’s governance structure was modeled to make patient engagement a priority. Patients hold network leadership positions, contribute to the decisions about network participation, and serve as partners in research. Because these stakeholders help formulate and approve research problems, PCORnet answers practical questions, leading to better-informed healthcare decisions.

Patient/Participant-Driven Research Organizations

Several PPRNs led by patients and organized around the evidence needs of their communities participated in phases 1 and 2 of PCORnet with PCORI funding support. They developed or expanded their capacity to engage their communities and conduct research that addressed their priorities. Now through PPRN Engagement Awards provided by PCORI, PPRNs will continue to strengthen their capacity to generate and prioritize research ideas, strengthen their capacity to disseminate study results, and participate in a PPRN learning network. Read more about this work.

To learn more about the PCORnet Partner Networks, click here.


Posted: December 16, 2013; Updated: March 31, 2020

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