Project Summary
A Path Towards a Learning Health System (PaTH) CRN is a partnership of 12 academic and clinical health systems across the mid-Atlantic and Midwest regions of the United States that is led by the University of Pittsburgh.
PaTH is committed to incorporating patients in the entire research process and creating and supporting patient-centered outcomes research that will have real-world impact on health delivery and healthcare decisions. The network is committed to providing the data and research infrastructure to develop and support diverse, patient-centered research and has advanced efforts to integrate patient-reported outcomes into the PCORnet Common Data Model. This effort, along with linkages to complementary data sources such as claims data from Medicare, provides a more complete picture of patients’ healthcare experience and is essential in providing the necessary depth of data for real-world evidence studies. Other areas of focus include an emphasis on data quality; the integration of patient perspectives into single IRB processes; and the efficient recruitment of patients for health research studies that are of interest to them, in coordination with clinical care.
To maximize research opportunities, PaTH actively engages with a multitude of different stakeholders, including patients, researchers, clinicians, and health system leaders. The network strives to integrate stakeholders throughout all aspects of the network and patient-centered research endeavors. To uphold PaTH’s patient-centric model, patient engagement is a network priority. This engagement is showcased through the MyPaTH Story Booth project, which invites patients and caregivers to share their stories and health journeys. This magnifies the patient voice while also creating an archive of key patient stakeholders that can be matched with researchers and patient-centered research projects. More information on this vital initiative can be found at the MyPaTH Story Booth web page.
PaTH is governed by the Executive Committee (EC), which consists of the PaTH lead principal investigator (PI), PIs from each of the partnering sites, and patient partners. The EC is charged with providing clinical expertise and research guidance and overseeing the overall operations of the network. The EC’s work is informed by four subcommittees:
- Policies and Processes Subcommittee, which provides insight on network procedures, business development, and stakeholder engagement
- Information Technology Subcommittee, which oversees the network’s data infrastructure
- Research Projects Subcommittee, which helps guide study implementation and prioritize future research
- Research Ethics and Regulations Subcommittee, which oversees the network’s IRBs and policies regarding protections of research subjects
PCORnet is intended to serve as a national resource for conducting rapid, efficient, patient-centered observational and interventional randomized research that improves healthcare delivery and health outcomes. Over the course of this project period PaTH will enhance and optimize its infrastructure to support a variety of patient-centered studies by:
- Ensuring meaningful engagement of patients, caregivers, clinicians, delivery systems, payors, and researchers, in all phases of the research process
- Operating through a network model in which data remains at the source while allowing approved researchers within and outside the network to access it securely through a central point
- Facilitating the public sharing of resources and reusable tools to make research more efficient and reproducible
- Using the PCORnet Common Data Model, which standardizes the data collected when patients receive care so that it is comparable across health systems and can be used for patient-centered outcomes research
- Using streamlined processes such as one central IRB for studies involving multiple systems and standardized data use agreements, to enable research to be quicker and more efficient
Title | A Path Towards a Learning Health System (PaTH) |
Network Design | Clinical Research Network |
Lead Partner | University of Pittsburgh |
Other Partners | Geisinger Health System Johns Hopkins Institute for Clinical and Translational Research Johns Hopkins Medicine Penn State College of Medicine Penn State Health Medical Center Temple University Medical Center The Ohio State University The Ohio State University Medical Center University of Michigan University of Michigan Institute for Clinical and Health Research UPMC |
Network Website | Pathnetwork.org |
About PCORnet® Clinical Research Networks (CRNs)
PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. Clinical Research Networks (CRNs) are one type of network supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions. |
COVID-19-Related Study
Summary
This study received additional funding in 2020 to quickly initiate new research related to COVID-19. The additional research is in progress. PCORI will post the research findings on this page once the results are final.
Recent data suggests the development of coagulopathy as a result of the inflammatory response to SARS-CoV-2 infection is associated with poorer outcomes in patients with COVID-19. The enhancement to this project utilizes the PCORnet Distributed Research Network Operations Center, vanguard Clinical Research Network (CRN) sites, and the PCORnet COVID-19 Common Data Model (CDM) to optimize and validate key COVID-19 data elements related to the treatment and outcomes associated with COVID-19 coagulopathy. This initial work will help to inform future work to better understand the prevalence and role of coagulopathy in COVID-19 and potential treatment options.
In the enhancement:
- Vanguard CRN slides will load priority data elements into their PCORnet COVID-19 CDM
- PCORnet COVID-19 CDMs at participating sites will be assessed for research readiness
- Priority data elements will be validated by the CRNs through provenance surveys
- Coordinating Center and CRNs will perform limited validations of case definitions and derived data elements
Enhancement Award Amount: $56,000