When Greg Merritt, a Patient Partner on the PCORnet® Steering Committee, first learned about the ADAPTABLE study in 2016, he was stunned. As a heart attack survivor who had been taking aspirin since 2012, he couldn’t believe that researchers were just now launching a study of 15,000 participants to determine optimal aspirin dosage for secondary prevention of heart attacks and strokes.
“Don’t we already know this?” Greg wondered. Like many patients, he had assumed these basic questions about common treatments had long been answered through large-scale research.
The reality surprised him. Without networks like PCORnet®, conducting research at a national scale is enormously challenging. “I had no idea that enrolling 15,000 patients was a big deal,” Greg reflected. “I just assumed this was how research was always done when it came to questions that affect millions of people.”
The truth is far different. Most clinical studies involve only a few hundred participants and rarely capture America’s population. This revelation sparked something in Greg—a dedication to transforming healthcare research. He envisioned a system where large, representative studies become the norm for addressing critical health questions, with patients involved every step of the way.
From Participant to Partner
Greg joined the ADAPTABLE study as one of its Patient Partners, known as “Adaptors.” As he became more involved, he noticed a gap: patients rarely had a voice in shaping research questions or study designs. At the time, incorporating the patient voice in research was still in its early stages, but PCORnet was paving the way for a future where patients were included from the very beginning. When Greg was invited to join the PCORnet® Steering Committee in 2019, he saw a chance to address this gap head-on by using his voice to shape and improve research powered by the national-scale, patient-centered infrastructure.
The journey from participant to partner would take some time. Greg found himself thrust into complex discussions about the PCORnet® Common Data Model and study designs, most of which were still a mystery to him.
“I spent the first year just trying to get up to speed,” Greg said. “During that time, I could see that the principal investigators and Steering Committee leadership were eager for my input, but I was worried that I would derail important conversations if I asked too many questions.”
Fortunately, Greg had support from other Patient Partners like Neely Williams and Nadine Zemon, who helped him navigate this new world. “With Neely and Nadine’s help, I found my voice. Now, the three of us cause more good trouble than most on these Steering Committee meetings,” he said with a smile.
At times, that “good trouble” is pointing out an overly burdensome requirement in a protocol that investigators may not flag as a recruitment risk, but that patients understand would be a barrier to participation. Other times, it may be questioning the endpoints of a study to ensure it delivers results that are truly helpful to those the research aims to benefit.
“We are not experts in clinical research, but we are experts in what it is like to be a patient considering participation in a clinical trial—and for a research team designing a study, that expertise can be quite valuable,” he said.
That value is reflected in a deeper integration of the patient perspective in the Steering Committee since Greg joined. For example, the Steering Committee recently began setting aside dedicated time at the end of each meeting for Patient Partners to understand what was discussed at the meetings and pose questions. The number of Patient Partners on the committee has also grown from three to eight, achieving an important balance by elevating patient voices to equal standing with research investigators.
“In its first decade, the PCORnet infrastructure has made great strides in helping researchers embed the patient voice at every level,” Greg said. “The increase in Patient Partners and the dedicated time for our input are significant steps toward true collaboration, where patients and researchers work side by side to shape the future of health research.”
A Vision for the Future
As Greg and others like him look ahead to the next 10 years, they envision a future in which large-scale research is not an exception but the rule, especially for answering fundamental health questions. With established connections and insights from everyday encounters with 47 million people across the U.S. each year, the PCORnet infrastructure is poised to play a key role in making large-scale, patient-centered research a standard practice.
But for this vision to be realized, patient engagement must also continue to evolve. Although PCORnet and others have raised the bar on integrating the patient voice, there is more to be done, particularly in ensuring that engagement efforts include voices from across social and economic backgrounds. There may also be opportunities to rethink how research findings are shared. For example, Greg and other Patient Partners are advocating for methods that go beyond traditional academic journals to make results more accessible and impactful. Podcasts, toolkits for clinical practice, and community forums could all help bridge the gap between research and real-world practice. Patient Partners can be instrumental in making these innovations happen, creating pathways that keep participants engaged even after a study concludes.
“I envision a time when involving patients from the earliest planning stages through to the dissemination of research findings is so ingrained in the research process that no one questions its necessity,” he said. “In 10 years, I want people to look at a study and say, ‘Haven’t we always done this? Was there ever a time we didn’t have Patient Partners guiding us along the way?'”
Are you interested in using PCORnet to power your next research effort? Visit the PCORnet® Front Door to start the conversation.