PCORnet® stakeholders and leadership team members recently gave a National Institutes of Health (NIH) Collaboratory Grand Rounds webinar presentation on the near decade of research powered by PCORnet, including key accomplishments and the evolution of the Network. The presentation featured thoughtful commentary on Network successes from Erin Holve, chief Research Infrastructure officer at PCORI; Russell Rothman, PCORnet® Executive Committee chair and STAR Clinical Research Network (CRN) principal investigator; Schuyler Jones, associate professor of Medicine and Population Health Sciences at Duke University and STAR CRN co-principal investigator; and Neha Pagidipati, associate professor of Medicine at Duke University.
Bringing to life PCORI’s priorities
PCORI supports research that generates the information people need to achieve better health outcomes, and it began funding the development of PCORnet in 2014 as an important national resource to achieve this goal. Today, PCORnet is comprised of eight CRNs, with hundreds of sites across the country providing inpatient and outpatient healthcare to over 30 million people each year. Data collected on these encounters are complemented by PCORnet-enabled access to patients, clinicians, researchers, and other stakeholders—a collaboration that enables meaningful research targets and faster answers.
“PCORI is the nation’s leading funder of patient-centered comparative clinical effectiveness research (CER), and the PCORnet infrastructure is a major force for bringing this and many other kinds of research to life,” said Rothman. “The Network serves as an important vehicle for transforming research in a way that achieves PCORI’s vision: outcomes that are more meaningful, more patient-centered, and deeply embedded in the real world.”
Milestones on the journey to date
The Network began with the idea that uniting data, patient insights, and research expertise could improve clinical research, but building such a large-scale national resource is easier said than done. Network leaders reflected on several key milestones on the PCORnet journey:
- Uniting the CRNs. PCORnet now comprises eight large CRNs that represent over 60 health systems across the country. Each of these sites maintains governance over its data, but they come together on a near-daily basis to collaborate on impactful research that makes a difference.
- Building the PCORnet® Common Data Model (CDM) and data network. PCORnet leadership needed a strategy to unite disparate data from the CRNs for research, and they ultimately solved this challenge with the PCORnet® The CDM standardizes electronic health record data into a common language so that a query can go to all sites participating in PCORnet from across the country and achieve rapid results. PCORnet leadership also built a data network to safeguard sensitive data through robust regulatory oversight, informatics approaches that limit data access, and rigorous quality checks so researchers and patients alike can feel confident in PCORnet-leveraged results. Now, PCORnet resources can be used to link to other data sources, like claims, geocoding and registries to more deeply understand the patient experience while maintaining patient privacy.
- Putting the Network to work. Perhaps the biggest feather in the cap of PCORnet leadership is the meaningful research its infrastructure has successfully supported. The ADAPTABLE trial successfully recruited 15,000 participants—the largest study to date looking at appropriate aspirin dosing—through a novel, pragmatic design that deeply embedded patients in every step, from inception through dissemination of results. The PREVENTABLE study has already enrolled 5,000 patients aged 75 or older—a challenging demographic to recruit—to understand the impact of statins on heart disease, disability, and dementia. These and many other studies prove that the Network can transform how research is conducted and deliver results that matter to communities.
- Engaging patients, caregivers, and other stakeholders. The Network’s developers believe that patients’ lived experiences are critical to good research and designed the PCORnet infrastructure in a way that embeds those perspectives throughout the study journey. Today, patients and other stakeholders sit on the PCORnet® Steering Committee, participate in the infrastructure and governance of all eight CRNs, and participate in PCORnet designated studies. Stakeholders participate in all aspects of the research process from identifying research priorities to study implementation, evaluation, and dissemination of results. Taking research out of the ivory towers and into the real world where results are most applicable is a sea change that PCORnet leaders are happy to lead.
Looking ahead
PCORnet leaders see tremendous opportunities for the Network to grow and support even more patient-centered research. There is momentum around expanding the depth of PCORnet-accessible data to bring in more patient-reported measures that can complement electronic health record data and generate more meaningful results. Recent efforts to embrace technology, like privacy-preserving record linkage, reflect the leaders’ continued commitment to build out an infrastructure that extracts the richest data possible while maintaining strict privacy protections for patients.
“The future for PCORnet is very bright, and there is a shared commitment across our CRNs to build on our success and maintain the positive momentum we have achieved,” said Rothman. “The possibilities for the next ten years with PCORnet are huge, and I think we are all excited to be a part of this journey to come.”
The NIH Collaboratory Grand Rounds webinar recording is available now to view and listen. Additionally, a podcast on this topic is now also available and answers questions from webinar listeners about the presentation.