Speakers
Erin Holve, PhD, MPH, MPP
Chief Research Infrastructure Officer,
Patient-Centered Outcomes Research Institute (PCORI)
Russell Rothman. MD, MPP
Director Institute for Medicine and Public Health and Senior Vice President, Population and Public Health, Vanderbilt University Medical Center
Schuyler Jones, MD
Associate Professor, Duke Clinical Research Institute and Population Health Sciences,
Duke University School of Medicine
Neha Pagidipati, MD, MPH
Associate Professor, Duke Clinical Research Institute
Duke University School of Medicine
Keywords
Pragmatic Clinical Trials, PCORI, PCORnet®
Key Points
- The Patient-Centered Outcomes Research Institute (PCORI) funds studies designed to help people make better informed healthcare decisions. It is an independent, nonprofit, research institute and leading funder of patient-centered comparative clinical effectiveness research (CER).
- PCORnet®. is funded by PCORI and was launched almost 10 years ago. It has grown to be a major force for supporting pragmatic research, both real-world evidence research and supporting observational research and pragmatic clinical trials.
- PCORnet®. has 8 clinical research networks across the country. Patients and caregivers are integrated into all phases of PCORnet®.-enabled research. Data are drawn from millions of EHRs with growing links to patient-reported and payor data. PCORnet®.connects you to thousands of clinicians and researchers who can support your effort.
- Every PCORnet®. project has very robust approaches to engaging patients across the continuum of the research from the identification of research questions to the planning phase to the implementation phase to the analysis phase and out to the dissemination of results.
- Many different types of observational studies are possible with PCORnet®. across all therapeutic areas. It is one of the only data resources with granular clinical data, lab data, and very large sample sizes. We have significantly improved the process of working with sites to collect and refine the data over time. PCORnet®. sites and PIs are really interested in collaborative academic partnerships.
- As the network was launched and the first trial, ADAPTABLE, was getting started, we came to the conclusion that we needed large, generalizable studies that were efficient. How could we harness the data that are already being produced, have patient partnership, and results that matter?
- Lessons learned from 3 PCORnet®.trials: We have to work smarter, not harder. We need scalability and team work. We have to continue to make strides to improve our clinical trial infrastructure and how we do studies.
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Discussion Themes
– Is there anything about what PCORnet®. has achieved that wasn’t imagined and, with a look to the future, what are the most important next steps to take to fully realize PCORnet’s potential? We did achieve a lot of the things we talked about in the first year, many of which we did not think were achievable. There are still some discussions now about where we might go with the common data model and if there are efficiencies in supporting more than one data model. For now, PCORnet®.has worked well for supporting the types of projects we want to support. We have tried to build engagement that helps us work with the CRNs and health systems to engage a broad array of stakeholders for each project we are doing.
– Where do you see the opportunities or steps to fulfill PCORnet’s potential? PCORnet®. works. There were a lot of components to how the network works. It is really phenomenal with how far it has come. Are there ways it can work more smoothly, take advantage of technology, have more consumer information that can facilitate these efforts? Those are the areas we are looking at moving forward. Where do we take the research activities that best use the infrastructure and move them forward?
Tags
#pctGR, @Collaboratory1