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Published on: August 1, 2019
8.0K
Launching PCORnet, a national patient-centered clinical research network
Rachael L Fleurence1, Lesley H Curtis2, Robert M Califf3
1Patient-Centered Outcomes Research Institute, Washington, DC, USA.
Summary
The Patient-Centered Outcomes Research Institute (PCORI) launched PCORnet, a national network using electronic health data for comparative effectiveness research (CER). It involves clinical and patient-powered research networks facing technical and regulatory challenges.
Area of Science:
- Health Services Research
- Biomedical Informatics
- Patient-Centered Research
Background:
- The Patient-Centered Outcomes Research Institute (PCORI) initiated PCORnet to build a national research infrastructure.
- PCORnet aims to leverage electronic health data for comparative effectiveness research (CER).
Purpose of the Study:
- To describe the establishment and initial challenges of PCORnet.
- To outline the structure and goals of PCORnet's constituent networks.
Main Methods:
- Funding of 11 clinical data research networks (CDRNs) and 18 patient-powered research networks (PPRNs).
- CDRNs utilize electronic health records from integrated healthcare systems.
- PPRNs are patient-driven research partnerships focused on active participation.
Main Results:
- PCORnet represents a significant national effort to advance CER.
- The initiative involves diverse research networks with distinct operational models.
- Initial implementation faces technical, regulatory, and organizational hurdles.
Conclusions:
- PCORnet is a foundational step towards large-scale, patient-centered CER.
- Addressing identified challenges is crucial for the sustainability and success of PCORnet.
- The initiative highlights the potential of electronic health data in research.
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