Every November, the U.S. Pain Foundation brings our community together to spotlight something powerful: knowledge. 

We call it KNOWvember—a month-long campaign amplifying a theme that matters deeply to the pain community. This year, we’re focusing on an area that has too often felt disconnected from those it’s meant to serve: research.

Pain research should not feel like something that happens to us, without us. It should be a process that includes the voices, needs, and lived experiences of those living with pain—every step of the way. That’s why this year’s theme is #KNOWresearch—a call to better understand how research works, identify where the gaps are, and explore how each of us can help shape a better, more inclusive future.

What the Data Tells Us

Earlier this year, U.S. Pain Foundation conducted a national survey to better understand the impact of pain on individuals and families, and society as a whole. We asked the 2,400+ respondents about everything from access to care and mental health to participation in research.

The data tells a complex story. While participation in—and familiarity with—pain research remain low, interest is high. Seventy percent of adults living with pain said they weren’t aware of any studies or clinical trials available to them. Nearly nine in 10 had never participated. Yet 85% expressed interest in joining a study if participation were feasible and accessible. 

We found similar parallels in the pediatric pain community: 84% percent of parents and guardians said their child had never participated in a study, and 74% reported that a provider had never brought forward research as an option. Nearly seven in 10 said there’s not enough information out there about pediatric pain research—but 91% of families were open to research participation under the right circumstances.

These numbers reflect a critical disconnect: families want answers, but the opportunities are not reaching them.

What’s Getting in the Way

When asked about barriers, respondents cited both emotional and logistical challenges.

Many simply didn’t know where to find research opportunities. Others feared being asked to pause their current treatments or worried about side effects, receiving a placebo, or safety concerns. Parents were concerned about physical, emotional, and social impacts on their child.

Some faced practical issues—transportation, time, cost, or living in rural areas without nearby study opportunities. Mistrust in the research system and a history of exclusion also played a role.

Solutions from the Community

The good news is that respondents shared clear, actionable ways to make research more accessible. The majority said they’d be more likely to participate if studies offered virtual or remote options, clearly explained expectations, accommodated flexible schedules, and helped offset travel or related costs.

Financial support matters, but so does communication—especially when it’s free of medical jargon and welcomes people with multiple conditions, complex diagnoses, or underserved identities. These are steps research teams can take right now to open doors for more people with pain.

The Disconnect Between Research and Real Care

One of the most striking findings is how few people believe that research is making it into real-world care. Only 10% of respondents said they feel research findings are being applied in medical practice.

That skepticism is why this KNOWvember will focus on closing the gap between science and everyday care. We’ll explore how research becomes treatment, what “evidence” really means, and how people with pain can advocate for, partner in, and shape studies that reflect their needs and measure what truly matters.

Where Research Is Most Needed

When we asked the community where research should focus, responses were rich with insight. People called for more work on new medications, the relationship between mental health and pain, aging and chronic pain, alternative and non-invasive treatments, and better diagnostic tools. Many emphasized the importance of patient-reported outcomes—measures that reflect how pain affects day-to-day life, including fatigue, function, and participation in school or work.

Together, these priorities tell a story: People want options that work, measures that reflect lived experience, and tests that make pain visible and diagnosable.

Just as key, 95% said it is important to include patient voices in the design, goals, and process of pain research. This is not a nice-to-have. It is how we ensure that studies ask the right questions, recruit the right participants, and measure outcomes that matter.

In Our Community’s Own Words

Just as powerful as the data were the personal narratives. Hundreds of people shared open-ended reflections filled with frustration, exclusion, and resilience—offering a human lens into why research participation so often feels out of reach.

“I was asked to participate, but that required me to discontinue my prescriptions. I understood why; it made sense. But it also meant no pain control, so I withdrew.”

“I live in a rural community, my access is limited.”

“I get rejected from studies for being too sick.”

“There are never any close enough to participate; plus I am considered ‘too old’ for many studies.”

“[My child] rarely qualifies due to dual diagnoses, so we often waste our and others’ time trying to join.”

“I’ve tried to apply and I have been informed there’s “enough of my type of people involved” in the trial, i.e. ethnic, rural, disabled, woman.”

These voices tell us something critical: willingness isn’t the issue. People with pain want to engage in research. But the current system makes it too hard, too confusing, and too narrow in whom it includes. If research is ever going to reflect and address the real needs of people living with pain, it must first welcome them in.

What #KNOWresearch Is All About

This year’s KNOWvember is about changing these problems. It’s about making research transparent, collaborative, and accessible to the people it’s meant to serve.

Throughout the month, we’ll be highlighting how research works, what needs to change, and how people living with pain can be full partners in the process—not just participants, but co-creators. We’ll also celebrate researchers who actively partner with people with lived experience (PWLEs) and share practical ways to make studies more accessible, equitable, and human-centered.

How You Can Get Involved

There are many ways to take part this month. Whether you want to participate in research, shape how studies are designed, or simply understand what the latest results mean for your care, there is a place for you.

• Stay connected. Follow our KNOWvember hub and social channels all month long for weekly articles, webinar updates, statistics, scientific insights, and event details.
• Bring your questions. Join the webinars and ask anything—even if you’ve never been invited into research before. Your questions will guide our next resources.
• Tell us what you need. We’ll share a short interest form to learn which topics and supports would make research more accessible for you and your family.
• Share your voice. If you’ve been in a study, tell us what helped and what didn’t. Lived experience is the engine of better research.

The Bottom Line

For too long, people living with pain have been asked to wait. Wait for new treatments. Wait to be heard. Wait for change.

But meaningful progress happens when we stop waiting and start co-creating.

Pain research doesn’t have to be distant or impersonal. It can be deeply human. It can reflect our realities, our needs, and our hopes.

This KNOWvember, let’s move from overlooked to understood—and get to #KNOWresearch together.

To learn more or get involved, visit uspainfoundation.org/knowvember/knowresearch.

Follow along all month—and help ensure that pain research reflects what matters most: you.

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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