Greater Plains Collaborative Optimizing Infrastructure for Conducting Patient-Centered Outcomes Research: PCORnet, The National Patient-Centered Clinical Research Network: Phase 3

The Greater Plains Collaborative (GPC) is a network of leading 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 GPC is strongly committed to PCORnet and to providing the structure to develop and support diverse research with meaningful patient involvement.

The GPC’s response to the COVID-19 pandemic was immediate and sustained. Ten GPC partners quickly established weekly CDM refreshes by April and continue to have the highest number of sites in Centers for Disease Control (CDC) COVID surveillance efforts. The GPC complements strong data infrastructure with robust engagement and leads in national prospective clinical trial recruitment. GPC was the second highest recruiting network to the PCORI ADAPTABLE trial comparing the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease. GPC currently leads recruitment for the NIH PREVENTABLE trial determining if a statin could help older adults live well for longer by preventing dementia, disability, or heart disease. Current capabilities also resulted in additional successful projects:

• “RE-POWER: Midwestern Collaborative for Treating Obesity in Rural Primary Care”
• “INVESTED: Influenza Vaccine to Effectively Stop Cardio Thoracic Events and Decompensated Heart Failure”
• “The Effect of Medicaid Expansion on Diabetes Treatment”
• “Identifying Personalized Risk of Acute Kidney Injury with Machine Learning”
• “Using PCORnet to Expand the DS-INCLUDE Cohort Through Healthcare System Recruitment, Incorporating Electronic Health Records, and Assessing Self-Determination”
• “Using social determinants of health, frailty and functional status to identify at-risk patients & improve risk adjustment”
• “Using PCORnet to Understand Use of Molecular Tests and Treatments for Cancerous Tumors”
• Developing the Brain Injury Data Sharing project that links the military and veteran health records with PCORnet to make a patient-centered record of the complete care for service members with traumatic brain injury

GPC’s stakeholder engagement efforts (a) nourish long-term relationship with the GPC network for stakeholder-engaged governance and (b) foster more focused shorter-term engagement for specific projects to impact research at the earliest phases of feasibility and research question refinement. In Phase 3, the team will build upon its successful programmatic engagement resources and highlight:

• Annual Learning Engagement Conferences, which have served as a venue for culture building, engaged policy development, and research sharing. Each year, engagement is highlighted from the podium, in breakout sessions, and in introducing new ways for engagement participants to influence governance and learning across the collaborative.
• Using the Rapid Patient and Community Engagement (PACE) platform to encourage patient engagement for investigators using the GPC. PACE coordinates one-hour sessions where investigators are provided a facilitated discussion of the project and each patient participant provides their insights, questions, and recommendations.

Current GPC sites continue to have their data “Approved for Research” and maintain strong rates of participation in data queries. The team will improve data by:

• Standardizing how to link cancer registries to health records in the PCORnet Common Data model as well as implement technologies to extract data from electronic health records in real time
• Continuing to integrate Medicare/Medicaid insurance data
• Linking the veteran and military health records to PCORnet

GPC will enhance information sharing and explain how to use the resources within its region and the public via a GPC website front porch and support research/query development to fuel patient-engaged research.