PCORI Funds 8 Research Networks for PCORnet’s Phase 3
The Patient-Centered Outcome Research Institute’s board has approved $61.3 million for eight clinical research networks (CRNs) to participate in PCORnet’s third phase beginning in 2022.
A “network of networks” funded by PCORI, PCORnet involves many major health systems and provides access to health data, research expertise and patient insights to foster more efficient patient-centered clinical research. PCORnet infrastructure has supported the use of pragmatic and realistic trial designs to close the research-to-bedside time gap and continuous learning capability during COVID-19.
Key activities of Phase 3 include increasing the diversity of patient populations and care settings within PCORnet, efficiently implementing studies addressing PCORI’s strategic research priorities, strengthening patient and stakeholder engagement, and providing high-quality data to power studies.
Here are profiles of the CRNs awarded funding:
Accelerating Data Value Across a National Community Health Center (ADVANCE) Collaborative is one of the nation’s largest research networks of community health centers (CHCs), which mostly serve patients on Medicaid and patients without insurance. ADVANCE’s mission is to improve health equity, health outcomes, policy, and primary care research using rigorous scientific methods. ADVANCE engages patients treated in CHCs in people-centered research to make sure that patients living at or below the Federal Poverty Level (FPL); immigrants; Black, Indigenous, and People of Color (BIPOC); parents and their children; members of the LGBTQIA communities; people experiencing homelessness; and many others who are often not included in research are represented.
Portland-based OCHIN is the lead site for the ADVANCE Clinical Research Network (CRN), which includes Fenway Health, Health Choice Network (HCN), and Oregon Health and Science University (OHSU). ADVANCE has clinical data from 164 CHCs and Federally Qualified Health Centers (FQHCs) with 1,504 clinic sites across 30 states. ADVANCE has current and retrospective data on over 6.5 million distinct patients.
The Greater Plains Collaborative (GPC) is a network of medical centers across the central United States that are committed to a shared vision of improving healthcare delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination. GPC partners by state are: Iowa, University of Iowa Healthcare; Kansas, the University of Kansas Medical Center; Minnesota, the Allina Healthcare; Missouri, the University of Missouri and Washington University; Nebraska, the University of Nebraska Medical Center; Texas, the University of Texas Health Science Center at San Antonio, the University of Texas Health Science Center at Houston, and the University of Texas Southwestern Medical Center; Utah, Intermountain Healthcare and the University of Utah; and Wisconsin, the Medical College of Wisconsin and Marshfield Clinic.
The INSIGHT Clinical Research Network is characterized by a diverse population of over 13 million patients across six major health systems in New York City. INSIGHT includes health systems and organizations representing academic medical centers, clinical and translational science centers, patients and advocates, public and private health plans, and research institutions. The INSIGHT CRN offers innovative services and data to support both observational and interventional research on a local and national scale. The team continues to pursue new and innovative improvements to its database, including recent expansions of data for rapid COVID-19 research and unique data linkages that allow the team to connect clinical data, social determinants of health data, claims data, and other data sources for comprehensive research studies.
The OneFlorida+ Network includes 10 health system and clinical partners in Florida as well as metropolitan sites in Atlanta and Birmingham, Ala.. The University of Florida (UF) serves as the coordinating center. Participants in the OneFlorida+ of today look like the United States of tomorrow: older and more diverse in race, ethnicity, and socioeconomic vulnerability. The network’s diverse health settings include academic health centers, statewide and regional health systems, federally qualified health centers, and safety-net behavioral health providers. OneFlorida+ has 16.8 million patients in Florida, 2.1 million patients in Georgia, and 9,100 patients in Alabama (19.9 million total).
A key component within OneFlorida+ is the Data Trust, a centralized data store currently containing electronic health record data for 16.8 million Floridians linked to healthcare claims, geographic location information, mother-baby information about birth, and tumor registry data. OneFlorida+ has experts in natural language processing, who used technology at the University of Florida (GatorTron) to more efficiently use clinical notes to understand and identify critical clinical concepts, such as disease states and social determinants of health that can be used in future patient-centered research.
The PaTH Network brings together researchers, clinicians, patients, and health system leaders from the Mid-Atlantic and Mid-West regions: the University of Pittsburgh/UPMC Health System; Geisinger Health; Johns Hopkins University/Johns Hopkins Health System, Penn State College of Medicine/Penn State Milton S. Hershey Medical Center; Temple Health System/Lewis Katz School of Medicine at Temple University; the Ohio State University/Ohio State University Wexner Medical Center; and the University of Michigan/Michigan Medicine. To optimize the ability to support studies, the team has linked health record data with other data such as health claims.
The PEDSnet CRN’s guiding purpose is to improve child health through knowledge production that is efficient (produced faster at less cost) and meaningful (useful to patients, caregivers, clinicians, and health system leaders). Led by the Children’s Hospital of Philadelphia (CHOP), PEDSnet is the only PCORnet CRN focused exclusively on improving child health and pediatric health system performance. The network is composed of eight of the nation’s leading children’s hospital health systems, which have developed the largest pediatric-specific electronic health record database in the nation, comprising data for 7,240,314 children who reside primarily in 12 states. These data have been used in 91 studies funded with over $80 million in grants and contracts. PEDSnet has the ability to conduct research studies using existing data only, but it has also used those data to identify children eligible for clinical trials and other studies involving patient recruitment.
Research Action for Health Network (REACHnet) includes EHR data for nearly 8 million patients from four partner health systems: Ochsner Health, Tulane Medical Center, University Medical Center New Orleans, and Baylor Scott & White Health. Collectively, these health systems serve a diverse patient population across Louisiana and Texas, with 35 percent racial and ethnic minorities. Two academic partners, Pennington Biomedical Research Center and the Louisiana State University Health Sciences Center, support REACHnet health systems in research generation, implementation, and leadership or partnership. REACHnet also has partnerships with three health plans—Blue Cross Blue Shield Louisiana, Humana, and CVS Health—so that data from electronic health records and health insurance claims can be used together in research.
The Stakeholders, Technology, And Research Clinical Research Network (STAR CRN) includes Vanderbilt Health System, the Vanderbilt Healthcare Affiliated Network, Meharry Medical College, UNC Health Care System, Duke Health Care System, Health Sciences of South Carolina, Wake Forest Baptist Health, and Mayo Clinic. These systems include scores of academic and community hospitals, hundreds of practices, and approximately 12 million unique patients. The populations cared for by STAR CRN are diverse in age, race, ethnicity, socioeconomic, and urban/rural status. The objective of this CRN is to support projects in comparative effectiveness research, pragmatic clinical trials, and other research areas. A major goal is to support patient-centered research that is national in scope and addresses PCORI and other important public and consumer research priorities.
Currently, the STAR CRN operates as a distributed data network and maintains eight distinct data marts, with centralized coordination. These data marts have electronic health record data on over 14.9 million diverse patients with over 370 million clinical encounters. Data marts of the STAR CRN have passed all data curation cycles in the past two years, have responded to over 90 percent of recent query requests, and respond to queries within the required time allotments. Members of STAR CRN have deep expertise in data extraction, data curation, natural language processing, machine learning, and other approaches that help to drive quality and innovation. In addition, the team developed and leverage REDCap, a secure web application for building and managing online surveys and databases, to support data capture for research studies. During Phase 3, the team anticipates further expansion of STAR data marts with increased patient volume, depth of data, and site expansion.
PCORI is expected to announce the funding contract for the PCORnet Coordinating Center in December.
