PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, is increasingly generating buzz as a game changer in clinical research. The Network has been described in many ways: a bridge that unites patients, families, providers, and researchers; a learning health system with the power to drive more meaningful, faster, and less costly patient-centered insights; and a collaborative platform that offers researchers access to large amounts of previously untapped health data collected in everyday patient care settings.
While all of these points are important and compelling, one of the most fundamental questions about PCORnet is often overlooked: how does one actually use it?
The answer starts with PCORnet’s Front Door feature, which is now open to all interested investigators. Managed by the PCORnet Coordinating Center, the Front Door gives potential investigators, including patient groups, healthcare organizations, clinicians, government, industry scientists, and sponsors, a central gateway to reach PCORnet resources. Via the Front Door, investigators can query data, find potential collaboration opportunities, and more. Since it launched, several researchers have already leveraged PCORnet’s rich opportunities and data assets for their studies, including research veteran Robert McBurney.
Currently the co-principal investigator for the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), iConquerMS, and CEO of the Accelerated Cure Project for Multiple Sclerosis, McBurney is no stranger to clinical research. Last year, while pursuing funding for a multiple sclerosis (MS) study, McBurney sought out the Front Door to determine if PCORnet’s resources were the right fit for the study, as well as to connect with PCORnet investigators to collaborate on study planning.
“I cannot overstate the tremendous value PCORnet’s Front Door provided my team of investigators. Every step of the process was thorough and efficient,” said McBurney. “As a user of the Front Door, we were able to quickly reach networks and clinics we normally would spend weeks trying to connect with, and, once connected, we found ourselves diving into a wide range of data, including several interesting demographic populations that are crucial to the advancement of MS treatments.”
“I cannot overstate the
tremendous value PCORnet’s
Front Door provided my team
of investigators. Every step of the
process was thorough and efficient.
Robert McBurney, PhD – Co-PI, MS-PPRN, iConquerMS and CEO of the Accelerated Cure Project for MS
McBurney took full advantage of a broad range of offerings through the Front Door, beginning with compiling an official Letter of Intent for the proposed study and submitting a Request for Collaborators and a PCORnet Query. He worked closely with the PCORnet Coordinating Center to ask his research question to thousands of people across the country at the same time, seek out potential collaborators, and determine his study’s feasibility. What’s more, he accomplished all of this in a few weeks as opposed to the months-long process typically experienced without PCORnet’s help.
Melanie Canterberry, senior analyst for REACHnet, a PCORnet Clinical Data Research Network, is another user of PCORnet data. In a conversation with the Centers for Disease Control and Prevention (CDC), she learned of a need for health data to monitor and evaluate an expansion of the nation’s screening program for latent tuberculosis infection (LTBI). Canterberry found herself in the perfect position to dive into PCORnet’s resources. Her goal was to obtain baseline data about LTBI within the PCORnet Common Data Model (CDM) to establish feasibility for the CDC study.
“After a group meeting to outline the needs of the CDC, working within PCORnet allowed us to compile a set of TB/LTBI-focused preliminary results for the CDC from two CDRNs in about two to three weeks,” said Canterberry. “One success factor for us was the CDC’s well-defined needs and familiarity with medical codes used in the CDM, which allowed for efficient query development and ensured we were able to provide them with useful results to inform their study.”
As a collaborative platform and a learning health system, PCORnet is taking insights learned from McBurney, Canterberry and other PCORnet users to continuously improve the resources available to the public through the Front Door. In the meantime, the Front Door remains open to all relevant stakeholders seeking a more efficient, less costly method of clinical research. Users have the option to submit a request for Study Feasibility Review, Data Network Queries, Network Collaborators, and/or PCORnet Study Designation.
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PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.