MINNEAPOLIS — Gillette Children’s in St. Paul is trying to boost public confidence in medical research by doing something long considered taboo in U.S. healthcare: paying patients and their families to get involved.
The hospital for children and adults with disabilities is one of the first in the U.S. to hire “lived experience” partners who help researchers decide what to study when it comes to experimental treatments and how to evaluate their success or failure. The approach gained national attention this month when it was featured in Pediatrics, an influential scientific journal, as an example for others to follow.
In the past, researchers haven’t paid patients to sign up for clinical trials of new therapies or drugs, beyond travel reimbursements or token gift cards, because they worried that payment might give them a financial incentive to lie or take risks with their own health. But paying patients to give advice based on their own life experiences on how to conduct research can avoid other ethical pitfalls, including the professional incentives that motivate researchers, said Rhonda Cady, leader of Gillette’s health services research.
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“The bias of academic research is, ‘What is going to get me funded? What is going to get me tenure?’ Not, ‘What is going to improve the health and quality-of-life outcomes of the person living with this condition?’” she said.
Program leaders said embracing the insights of patients and families could help restore public trust in research that declined following the COVID-19 pandemic and disagreements over everything from vaccines to masks to stay-at-home orders.
The share of Americans with little or no confidence in scientists rose from 12% in 2020 to 27% in 2023, according to polling by Pew Research Center. That trend has started to reverse, but more people still doubt scientists than they did before the pandemic.
Adenike Chon of St. Paul said her experience raising a 17-year-old son with a disability helped her guide Gillette on multiple studies. Her feedback helped broaden a study of a new wheelchair design, for example, to consider the needs of children at different ages and developmental stages. Patient and family input on research should result in better studies with more reliable results, she said, which should in turn boost public confidence.
“You know what happens when you don’t do that? Research programs fail. Devices fail. You have to do research over when you find out you did it wrong, which ends up costing more,” Chon said.
Forty-two patients or relatives have signed up so far to consult on research at Gillette, and 20 are involved in ongoing studies. The hospital considers them contractors who bill at hourly rates of $35 or more.
Payment not only compensates participants for their time, but it gives them a status level in studies that researchers take seriously, said Haley Brunelle, Gillette’s coordinator for family engagement in research. Each study at Gillette needs three lived experience partners to ensure a variety of perspectives.
“I like to think of that old disability mantra, ‘Nothing about us without us,’” Brunelle said. “It’s kind of democratizing the research process.”
Kari Pederson, a Gillette patient for more than 50 years, was diagnosed at age 3 with cerebral palsy, a neurological disorder that severely disrupts muscle tone, movement and posture. She became so closely involved with researchers at Gillette that she ended up as the lead author of an abstract on fall risks that was featured at a recent national conference.
The paper offered a unique perspective on what people with cerebral palsy want and don’t want to keep them safe from injuries, she said.
“I think it’s really affected the culture of Gillette’s research,” she said of the lived experience program, “because they really care about the voice of the patient, but there wasn’t a vehicle for that voice to be shared.”
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