By Samantha Kahn

For decades, research treated people with pain as passive subjects, collecting data without letting them help shape the studies defining their treatment. That’s changing.

There’s a growing movement across the research landscape to involve people with lived experience (PWLE), such as those living with chronic pain, as valued partners from the earliest stages. This realignment shifts the balance of power and strengthens research’s relevance, accessibility, and impact.

Moving from ‘about’ to ‘with’

Prioritizing patient representation ensures that methods and outcomes reflect what matters most to those the research aims to serve.

“You need to understand from the beginning what’s going to be realistic for someone living with pain,” says Janelle Letzen, PhD, a researcher who formerly worked with the National Institutes of Health (NIH) Office of Pain Policy and Planning. “If you develop a new spinal cord stimulator, but the community says, ‘That’s not something we would want to use, or could realistically fit into our schedules,’ then that treatment is not going to work.”

Tom Norris, Lt. Col., USAF (Retired), MPA, BCPA, is a U.S. Pain Foundation volunteer and is nationally credentialed through the Patient Advocate Certification Board. He has served as a patient partner on multiple research studies and guideline development panels.

In his first advisory role, he helped develop study materials and ensured published results were presented in a patient-centered way.

“It was so enlightening to me to see the power that our stories have, the power that we each have based on the journey that we go through,” he recalls. “I saw how it affected the progress of the study, and I was sold. I think the researchers were, too.” They’ve since asked him to advise on five other trials, and he isn’t slowing down.

From exclusion to recognition

Until recently, there was little to no effort made to include the lived-experience perspective in science, says Christin Veasley, co-founder and director of the Chronic Pain Research Alliance, a collaborative advocacy initiative focused on increasing federal investment in pain research and promoting meaningful inclusion of PWLE in pain research.

“It was almost the opposite, because they saw us as biased and not having the skill set to contribute,” she explains. “A lot of the inclusion in early years was very tokenistic.”

Now, researchers have begun to acknowledge lived experience as an equally valid form of expertise.

“Even though we don’t always have an academic PhD, those of us who have lived with chronic pain for 10, 20, 30 years have a PhD in chronic pain, literally,” Veasley asserts.

A turning point came with the creation of the Patient-Centered Outcomes Research Institute (PCORI), the first major U.S. research funder to require equitable inclusion of PWLE. Veasley adds that the push for patient research engagement within the Department of Veterans Affairs also helped turn the tide.

The importance of early engagement

An often-overlooked step is seeking patient input before research questions are finalized. PWLE should be involved in shaping research aims, co-writing grants, designing studies, choosing outcome measures, and ensuring procedures are feasible and respectful.

“Most researchers are not intentionally trying to do harm or disregard patients,” Veasley clarifies. “I really see this as a lack of understanding, and a lack of education and training.”

Incorporating PWLE early and often has resulted in faster recruitment, better retention, and lower costs, she shares.

It can also help inform relevant, patient-centered results. “If research doesn’t lead to actual changes in people’s lives, then it’s not going to be meaningful, and it’s not going to be a good use of funds,” says Letzen.

From consultation to collaboration

Patient advisers’ past interactions with pain scientists may be limited to having researchers enter their community, ask them to enroll in trials, and then “swoop out” again, often without sharing the results of their participation, Veasley says.

To empower PWLE as collaborators, pain scientists should clarify research roles, avoid excessive jargon, and provide training so all partners can participate on equal footing.

“Everyone on your research team has their own area of expertise,” Letzen says. “For someone with lived experience, their expertise is knowing what it’s like to live with the pain condition and navigate the health care system, and telling you whether what you’re studying is even worth it.”

Becoming a research adviser

There are many entry points to becoming a patient research partner. PCORI offers a free “Research Fundamentals” training. Veterans Affairs provides patient-engagement resources. Patient advocacy organizations have various offerings, including U.S. Pain Foundation’s annual advocacy training, which teaches individuals to share their journeys and drive change. Certain patient-engagement programs, such as a toolkit offered through HIPxChange at the University of Wisconsin-Madison, are geared toward researchers but can also help equip patient advisers.

“Your voice matters, more than you realize,” Norris says. “I push researchers to recognize that PWLE are not ‘add-ons.’ We are integral members of the team. Patient engagement, which grows out of patient empowerment, has become my guiding force. It’s how we make sure research reflects real lives, real needs, and real solutions.”

Veasley and others are planning an online “research match” platform to connect patients and researchers, with educational resources for both scientists and PWLE like engagement best practices and a Research 101 tutorial. She also recommends reaching out to organizations like PCORI and engaging with advocacy organizations, which researchers often contact when looking for patient partners.

The bottom line for future patient engagement, as Norris says, is simple: “Nothing about us, without us.”