A Platform 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—to conduct patient-centered outcomes research faster, more efficiently, and at lower cost, by leveraging the power of health data and unique patient partnerships. This task was a natural fit for PCORI, which was created to fund comparative clinical effectiveness research, or CER, that can help patients, family caregivers, clinicians, payers, and other healthcare stakeholders make better-informed decisions.
PCORnet addresses some other challenges of traditional clinical research, such as 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.
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 Data Research Networks (CDRNs) and patient-initiated Patient-Powered Research Networks (PPRNs). PCORnet's first phase of development lasted 18 months. A second phase, with 13 CDRNs, 20 PPRNs, and 2 Health Plan Research Networks (HPRNS), began in the fall of 2015 and continues through late 2018.
Rapid-Cycle Research Studies and Projects
The PCORI Board of Governors approved funding for the rapid-cycle research studies and projects using PCORnet’s infrastructure to support stakeholder-prioritized rapid evidence generation.
People-Centered Research Foundation
In March 2017, a workgroup of researchers within PCORnet established the People-Centered Research Foundation (PCRF) as a private, nonprofit corporation that plans to build on the successes of PCORnet and further its mission as a sustainable platform for efficient, innovative research. Find out more about the PCRF from a March 2017 news release about the Board's approval of funding for the nonprofit organization, and an April 2017 blog post by PCORI Executive Director Joe Selby highlighting the creation of the initiative.
- Master Infrastructure Funding Contract for Advancement and Sustainability of PCORnet Infrastructure: Support of Infrastructure Projects of People-Centered Research Foundation
Kathy Hudson, PhD; People-Centered Research Foundation
Co-funding for Research
The Learning Healthcare System Networks Project (previously called the People-Centered Communities) will develop four pilots based on Cincinnati Children's Hospital Medical Center's successful learning network model. The learning network model supports the design, development, and implementation of data networks.
- Contract for Advancement of PCORnet Infrastructure: Development of Pilot People-Centered Communities Project
Peter Margolis, MD, PhD; Cincinnati Children's Hospital Medical Center
Patient-Centered Approach
PCORnet is a "network of networks" that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research. PCORnet’s CDRNs include hospitals, doctor’s offices, health centers, or other facilities that provide services to patients. The PPRNs are made up of patients and their families, caregivers, researchers, and other people or organizations focused on specific medical conditions or populations of interest.
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 informed healthcare decisions.
To learn more about the PCORnet Partner Networks, click here.
Posted: December 16, 2013; Updated: March 5, 2018