By Ashley Hattle
When you pick up your medication or see a pain specialist, you want the best possible care. But what if the development of those “best practices” and “standard-of-care treatments” excludes people who look like you, share the same identity, or have similar lived experiences?
Will they still work as effectively? If they don’t, will your specialist dismiss you as a “frequent flyer” or “drug-seeker”?
That is a recurring reality for populations who have been systematically left out of pain research.
“Marginalized people wind up feeling more marginalized, both by not being included in the studies in the first place, and then again when they feel unseen by their providers and find that their pain isn’t adequately managed,” explains Shanna K. Kattari, PhD, MEd, CSE, a researcher and associate professor of social work and women’s and gender studies at the University of Michigan.
Who’s included—and who’s excluded?
Most medical research to date has focused on white, cisgender men and women—and the researchers often looked the same. Racism, discrimination, and ableism toward disabled, BIPOC, and LGBTQ+ individuals shaped early findings. That history echoes in today’s research efforts, creating barriers that often prevent or discourage these communities from participating.
Study communications can affect who is compelled to enroll and may exclude certain individuals, notes Janelle Letzen, PhD, a researcher who formerly worked with the National Institutes of Health (NIH) Office of Pain Policy and Planning. Her research efforts measure the impacts of racism on certain aspects of chronic pain and seek to improve pain treatment outcomes in underserved groups.
Letzen adds that in addition to impacting research participation, persistent biases directly affect how the data is extrapolated, including how researchers formulate their statistical models.
In many published studies, researchers list the number of participants but not whether findings vary across race, ethnicity, sex assigned at birth, or socioeconomic background. And results rarely report gender beyond the binary male and female, says Kattari.
They note that research reporting standards widen these demographic gaps. For example, until recently, researchers were not required to recognize Middle Eastern, North African, biracial, or multiracial as distinct racial or ethnic categories.
“Research shows that trans and gender-diverse people are significantly more likely to be disabled than the general population, yet we know very little about them when it comes to pain research or pain conditions,” says Kattari.
If a pain study does focus on a marginalized group, it’s often one-dimensional or narrow in scope. A study about “women” doesn’t necessarily incorporate the experiences of, for instance, disabled women of color or transfeminine individuals. Neurodivergent people and those with multiple pain conditions or disabilities are often left out of the picture, too.
“Most pain research doesn’t ask about neurotype, so we may be missing neurodivergent folks, or getting different data than is their reality,” says Kattari.
Missed opportunities
Non-inclusive study language can create barriers for potential participants. Kattari missed one research opportunity because the screening assessment required them to select between “man” or “woman,” with no other genders listed.
They have been disqualified from other studies because they have multiple pain disorders or couldn’t discontinue medications used to manage another condition.
“There is nothing like being turned down for a study on pain because you are having too much pain in too many different ways,” they note.
What prevents individuals from joining?
When seeking to diversify research engagement, take note of access barriers that need to be addressed—such as travel costs, time off work, and the daily limitations of living with pain, says Melicia Whitt-Glover, PhD, chief executive officer of the Council on Black Health.
“Participating in research is somewhat of a luxury, and people with limited discretionary time may not be able to participate,” she explains.
Still, there’s more to the lack of diversity in clinical research than paid time off and transportation. Marginalized groups have historically faced significant harm at the hands of researchers and doctors—experiencing medical gaslighting, severe injury, and eugenics. That damage can’t be glossed over with better communication and gift cards.
Sowing trust and partnership
When starting a new research project, Letzen first builds community connections. She learned this approach during her time at Johns Hopkins University, an institution working to rectify a history of mistreating and exploiting Black Baltimore residents in research and treatment.
“Every scientist who really wants to engage the community has to do that same kind of relationship-building to repair that broken trust,” says Letzen.
She urges researchers to volunteer at local clinics, attend community events, and host town halls (with virtual options for those who can’t attend in person), inviting community members to discuss gaps in pain care and share their unique concerns.
Another meaningful step is removing stigmatizing phrases from medical spaces and documents. Clinicians commonly use “frequent flyer” and “drug-seeker” to describe individuals they perceive a certain way. Whitt-Glover nearly lost a friend because an emergency department dismissed her as drug-seeking. This terminology has real-life consequences, from the conception of a research study to its clinical application.
“Recognize that one person is one person,” Whitt-Glover says. “There are no characteristics that can describe, or should be attributed to, an entire population.”
The impact of getting it right
Diversity in pain research demands more than inclusion—it requires genuine welcome.
“People from marginalized groups are more likely to participate if they know people with shared identities and experiences were included in the work from the beginning, and when they recognize researchers from their community,” Kattari says.
More diverse participation in pain research means better pain care for all, increasing the odds that your next treatment might actually work—because it was conceptualized, studied by, and tested on people whose experiences reflect yours.