Every year on May 20, the date of the first-ever clinical trial conducted by James Lind in 1747, the world marks International Clinical Trials Day. It’s a time to celebrate all that has been accomplished by the clinical research community—clinicians, health systems, patients, and caregivers—who have joined forces to usher in significant advances to clinical trials since that time. Lind urged scientists to turn their hunches into evidence-driven facts and inspired the future of clinical trial design and research. It’s an example we are still following today, but with much more sophisticated tools, techniques, and approaches—many of which PCORnet has advanced.
Harnessing the power of real-world data
While the emergence of randomized controlled clinical trials (RCTs) like Lind’s gave us evidence-driven facts, such trials often fail to capture the full diversity of a population. Moreover, as they are usually conducted in specialized and carefully controlled settings, they frequently don’t tell us how solutions will perform in real-world settings. For a deeper understanding of how therapies play out in everyday circumstances, we need partnership across patients, health systems and other stakeholders. That’s why the PCORnet infrastructure was developed as a broad network of eight Clinical Research Networks (CRNs), with hundreds of sites across the country providing inpatient and outpatient healthcare for over 30 million patient encounters each year.
With the ability to access electronic health records (EHRs) and other health data sources through PCORnet, researchers can conduct studies using a wealth of information, including demographic data, medical history, treatment outcomes, and patient-reported outcomes. This rich data enables researchers to conduct more efficient and comprehensive studies that complement RCTs, uncover hidden patterns, and generate insights that can drive evidence-based clinical decision-making. Utilizing real-world data not only accelerates the pace of research, but also enhances the generalizability of study results to diverse patient populations.
Bridging communities
Traditionally, decisions surrounding the design, conduct, and dissemination of clinical trials have been made solely by research scientists. As a result, research has run the risk of being inefficient, overly burdensome for patients, and even ineffective, as the outcomes studied did not necessarily reflect the true needs of patients. We now know that when it comes to optimizing research design and implementation, collaboration is key. Multi-stakeholder insights, including those from patients as well as caregivers, clinicians, and research experts, bring a holistic lens to research that improves outcomes across the board.
PCORnet was developed with funding from PCORI in 2014 as the first national resource to deeply embed diverse patient and stakeholder engagement throughout the clinical trial process. In every research project designated formally as a PCORnet Study®, patients are actively involved in shaping research priorities, study design, and implementation, so that the clinical trials address their needs and concerns. The infrastructure of the Network also connects users with valuable resources and research expertise across the PCORnet ecosystem, creating a collaborative environment that helps researchers optimize their studies’ design and conduct.
Looking ahead
The research community has come a long way, and PCORnet resources have played a big role in ushering in a new era of patient-centered research—but there is still work to be done. As we celebrate this International Clinical Trials Day, let’s keep our eye on the horizon. The Network will continue to evolve, promising even more advances toward a world where research is truly patient-centered and where the collective efforts of diverse stakeholders shape the future of health care.
Are you interested in learning how PCORnet resources can support your next research study? Start the conversation by reaching out through the PCORnet® Front Door.