Pain research is strongest when it is inclusive and accessible to every group and population that can benefit from it—but many individuals still face barriers to participating in clinical trials and research.

The obstacles inhibiting greater research participation may be economic, social, medical, or logistical. Until they are addressed, pain research can’t reflect everyone it seeks to serve.

“My approach to pain science and research is, it takes a team,” shares Burel Goodin, PhD—a pain researcher and president of the United States Association for the Study of Pain (USASP). “You want a whole team of people who have been educated in different ways, who have different world experiences and cultures that they came up in, because then you get a bunch of ideas that you may not have thought about as a way of approaching a problem. You might call that diverse thinking and inclusive representation. This has been proven to be very effective.”

In a candid conversation with U.S. Pain Foundation as part of the #KNOWresearch initiative this KNOWvember, Goodin explored some of the barriers keeping this from happening, and shared ways in which he, and other pain researchers, are working to knock them down.

Feeling as Though Research Takes Too Long

Clinical research is a slow process. From start to finish, developing a new treatment—from discovering a molecule to having an FDA-approved pain treatment available on the market—can take 15 to 20 years.

“It’s way too long,” Goodin says. “While there’s a big push in research and funding therein to develop new treatments and new medicines, people don’t have 15 to 20 years to wait.”

On the researcher front, tackling that issue means not only continuing to work to develop new treatments but exploring ways to use what’s currently available in new and different ways.

Pain research does not only center around creating new medications, Goodin notes—trials and studies may also explore the effectiveness of new technology, talk therapy, complementary methods such as acupuncture, surgery, restorative treatments such as physical therapy, or herbal remedies.

The long road of pain research may feel discouraging—but since research projects are as varied and unique as the pain they’re trying to treat, having a broad and diverse pool of participants keeps the wheels turning.

Cost and Other Logistical Obstacles

Participating in research is a commitment that often requires a significant level of sacrifice from the individuals who contribute. They may need to take time off work or secure childcare. They might have to get themselves to a distant research location. 

Among the almost 2,100 individuals with pain responding to U.S. Pain Foundation’s national survey in 2025, 28% listed transportation as a barrier to research participation, 26% cited financial strain, and 24% pointed to time constraints.

It’s becoming more common for research studies to pay participants—both to defray transportation and other logistical costs, and to compensate them for their actual time. This should be the norm, Goodin stresses.

“I want to make it worth your while,” he says. “Your time is valuable. It requires money.”

He starts at a baseline hourly cost of reimbursing trial participants for their time, but notes that if a particular study requires participation that is more “burdensome or invasive,” their compensation should increase accordingly. Paying for gas or rideshares is another way to help remove some of the challenges of joining a study.

Research That Doesn’t Reflect Participants’ Realities

Many individuals living with pain find that when they start to explore research opportunities, the study process itself does not reflect their lived experience and realities. Maybe it’s the physical requirements of a study, the amount of time required each day, or a requirement that they stop all other treatments.

There’s a clear solution to reduce those barriers, Goodin explains.

“How do we make research that actually reflects people’s experiences and what they’re going through? We co-design it with them. We listen to what they have to say,” he says. “I would be naive and flat-out stupid to think that I’m an expert in people’s lived experiences.”

That may involve holding focus groups with people with lived experience (PWLE) before starting a study, or working with a person with pain, or a group of PWLE, as consultants, co-investigators, or advisers—from start to finish.

Lack of Knowledge About Research Opportunities

The top barrier to research participation, according to U.S. Pain’s survey, was awareness—59% of respondents who either have participated in research or are interested in doing so cited lack of knowledge as a main obstacle to joining research efforts, and 70% of respondents were unaware that pain studies existed at all.

Researchers can’t assume that people with pain will know about their work and find them, Goodin explains.

Getting the word out means not only working with established patient-advocacy organizations and existing patient panels, but putting in a boots-on-the-ground effort to reach more—and different—audiences, he says.

That may mean engaging with grassroots, local organizations—creating a mutual benefit by contributing to their efforts in the community, and asking them to get the word out about research opportunities to the individuals they serve. It might mean visiting rural health departments, local doctor’s offices, community centers, or churches to pass out flyers and spread the word in person.

“To do justice to the engagement piece—it’s more than a checkbox—sometimes a person like me actually has to be intentional about getting up out of my seat, and coming out of my ivory tower, so to speak, and meeting folks where they’re at, out in the community,” Goodin shares.

Mistrust in the Medical and Research System

To fully benefit from these various tactics to reduce barriers to research involvement, researchers can’t ignore a key piece, Goodin notes: Repairing the longstanding mistrust that many individuals and populations have in the medical and research system.

“This is steeped in a lot of history that supports how people might be thinking about clinical trials—the idea that you’re going to come in and just be a guinea pig,” he explains. “There’s history, and you don’t have to look back too far to see it, that that was true. Unfortunately, a lot of times, there are stories of big, old, brick-and-mortar universities and all their prestige coming in, taking what they need, and not leaving much for the community.”

One in four U.S. Pain survey respondents cited this mistrust as a key factor keeping them from participating in pain research.

Goodin shares that he’s actively working today to learn from and undo those past mistakes, and to ensure the pain research field does better moving forward.

To research participants, Goodin says, “You are not a guinea pig. You have agency. The idea of someone being a guinea pig who’s being poked and prodded on—that’s not how it’s going to be. Not at all. Not in my laboratory, not with the people I train or bring up as junior investigators. And frankly, if I hear about it, it’s not going to be like that for long, because I’m going to call it out.”

He calls on other researchers to take active steps to rebuild this broken trust. Don’t just shrug and say you weren’t able to recruit enough diverse participants, he says—be proactive in seeking out those voices in new ways.

“Rebuilding broken trust is my call to action for all my colleagues,” Goodin shares. “Get up out of your seat, challenge your comfort by getting out into the community, going and meeting people where they’re at, and engage them. You owe it to the people. You owe it to the relationships that we’re trying to mend. Because in doing so, we’re all going to benefit.”

Our 2025 KNOWvember campaign is made possible through the generous support of our sponsors, Vertex Pharmaceuticals and Lilly.

The U.S. Pain Foundation independently developed the content without review from its sponsors. This information is for educational purposes only and may not be used as a substitute for advice from a health care professional.

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