One day in 2012, Greg Merritt woke up feeling off.
“I think I’m having some indigestion,” Greg had told his wife. His wife pointed out that he hadn’t eaten recently, he didn’t have a history of heartburn—and that they needed to drive to the hospital in nearby Ann Arbor, Michigan, immediately. Greg’s wife had guessed correctly: he was having a heart attack.
Many chapters of Greg’s life led up to this impactful day, and his eventual role as an advocate for patient-centered care. “As a kid,” he shared, “I grew up in poverty, and education was sort of the way out for me, so I just kept going to school.” Greg ultimately earned his doctorate degree at Michigan State University and began a career supporting and teaching young people.
When he was a young person himself, Greg’s life was impacted by heart disease. “My mother has had two heart attacks,” he shares. “She had her first when she was quite young. I was 14 at the time, and I remember not quite understanding what that all meant.” Greg’s father had passed away in a car accident only a few years prior, so his mother’s health scares and the weeks she spent in the hospital were especially jarring.
Years later as his wife drove him to the hospital on that day in 2012, Greg clutched at his chest and collapsed in the car. He had gone into sudden cardiac arrest.
"Know That You’re Not Alone"
Every 40 seconds, someone in the United States has a heart attack, as Greg did. It is the leading cause of death for men in the country. But like many people, Greg did not know that he was at elevated risk. His wife encouraged him to seek preventive cardiology care, given his mother’s history; he had recently lost a healthy amount of weight; and while he was facing considerable responsibility at work, he didn’t perceive it as notable given that his uncles, for example, were ironworkers whose jobs took a very physical toll on their bodies. “In retrospect,” he shares, “there was actually a fair amount of stress that I wasn't managing as well as I could.”
Greg woke up in the hospital after the eventful drive over—none of which he could remember by the time he was revived. Thanks to his wife’s quick thinking and action, he had survived.
It's been a real joy to see that there are clinical researchers, clinicians, program managers, all of this staff on the research side who authentically and realistically care about patient voice, patient involvement, and patient family and caregiver involvement.Greg Merritt, PhD Founder, Patient is Partner, and Member, PCORI Advisory Panel on Clinical Trials
While in cardiac rehabilitation, Greg was invited to be a part of his healthcare institution’s patient advisory council, and his journey in patient-centered care began in earnest. The patient advisory council began making real changes in the way things were done by drawing on all parts of their lived experiences and skillsets. Changes included more patient-to-patient contact and peer support; patients who had been through the rehabilitation program would guide new participants and sit down with them to say: “we can build a community together to know that you're not alone."
Patients as Partners
This is how Greg’s own organization, Patient is Partner, began. Greg also began working with PCORI as a patient advisor on a trial, and eventually in his current role as a member of the PCORI Advisory Panel on Clinical Trials. “It's been a real joy to see that there are clinical researchers, clinicians, program managers, all of this staff on the research side who authentically and realistically care about patient voice, patient involvement, and patient family and caregiver involvement,” he shares.
He's also constantly thinking of new pathways for more patient engagement and leadership. Maybe, he explains, a patient would start as a study participant in a clinical trial. Then from that trial, he poses, what if “they learned that they could actually be on the study team as a focus group member? And then from that focus group, they learned they could actually be part of the lead investigative team?” The group of involved patients would keep growing “until the national experts are patient partners.”
Given Greg’s experiences, he says he’s never been able to see how health care should be anything other than patient centered. “What’s the alternative?” he asked himself when he first heard the term.
In fact, most terminology is very important to Greg in guiding how we view health, wellness, and health care and our roles in it. “If we just called it heart function,” rather than heart failure, for instance, he explains, “I think we'd be better. If we called it cardiac therapy instead of cardiac rehab, it would help.”
Also on Greg’s list: transforming “patient-centered care” into “patient partnerships.” “If the patient is your partner,” he explains, “it asks more of both of you.”
Posted: February 27, 2023
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.