Why and how should you use PCORnet®? That’s the question PCORnet leaders sought to answer when they recently presented at an adjunct event for AcademyHealth’s 2023 Annual Research Meeting (ARM) and at a half-day virtual convening held by NORC in collaboration with PCORI. Both events were a chance to showcase the uniqueness of PCORnet, which was developed in 2014 with funding from PCORI as a national resource for all.
The Network represents data from everyday healthcare encounters with more than 30 million people across the U.S. each year through partnerships with eight large clinical research networks, or CRNs. These data are brought into a standard, query-ready language by the PCORnet® Common Data Model, and patient communities are continuously engaged in all PCORnet-enabled efforts to ensure that research questions and outcomes are meaningful to patients. In today’s clinical research ecosystem where data, patient insights, and clinician expertise are often siloed elements that need to be plucked from separate resources, PCORnet unites all three, offering users a synergy they can’t find elsewhere.
“Since the Network was developed, it has proven its ability to drive fast, representative research results time and again,” said Adrian Hernandez, PCORnet® Coordinating Center principal investigator and executive director for the Duke Clinical Research Institute. “With each new project, our processes are more streamlined, our data are broader and more refined, and our connections across the PCORnet® Network Partners are tighter. These are success stories we want to get out into the research community. The Network is open for business and open to all—just knock on the PCORnet® Front Door to get started.”
Roadshow recaps
The first stop on PCORnet leaders’ roadshow was at AcademyHealth’s 2023 ARM, an event that draws more than 2,500 diverse stakeholders at the intersection of health, health care, and policy to share important findings and showcase the latest research on how to improve our nation’s health system.
After a brief introduction to PCORnet and its use for research, the event kicked into high gear with breakout sessions to shed light on how PCORnet infrastructure is addressing barriers related to using real-world data and incorporating patient and stakeholder engagement in national-level comparative clinical effectiveness research studies. Breakout sessions focused on PCORnet-accessible data, the PCORnet® Front Door, and potential funding opportunities available from PCORI.
“Having three topic-specific breakout sessions allowed us to get into the details potential users of the Network want to know,” said Hernandez. “For example, how does the data query process work in PCORnet, what data are available to address a given research question, and how can the PCORnet® Network Partners support your patient engagement strategy? ARM was a fantastic forum to answer these questions.”
The half-day virtual convening, hosted by NORC in collaboration with PCORI, “An Assessment of PCORnet: Stakeholder Convening,” offered attendees a deep dive into the PCORnet experience from the perspective of those who have used the Network first-hand. The meeting was split into two sections. The first focused on the preliminary findings from the assessment of PCORnet users’ experiences presented by NORC. The second section focused on discussing future opportunities to advance and evolve the Network.
The highlights of this event were the panel discussions, which captured thoughts from PCORnet® Steering Committee patient partners, the Coordinating Center, PCORnet® CRN principal investigators, PCORnet® Study investigators, and research funders. From sharing their personal experiences, to reflections on the preliminary assessment findings and opportunities to advance the Network, the discussion was a thoughtful reflection of how PCORnet infrastructure has grown and its potential to drive important patient-centered research.
“We’ve only scratched the surface of the Network’s full potential,” said Hernandez. “The high attendance at our two roadshows is a strong indicator that the research community sees PCORnet as a key resource on the journey to a healthcare ecosystem where the patient voice is at the fore of every effort.”
PCORnet leaders will maintain the momentum, with more events planned in the coming year. Watch this space for updates and opportunities to attend!