The 89% Problem: Why Chronic Pain Patients Are Missing from the Research That's Meant to Help Them

Let that sink in. Nearly 9 out of 10 people living with chronic pain—the very people research is meant to help—are completely disconnected from the research enterprise. Even more troubling? 70% are unaware that chronic pain research opportunities even exist.

Why This Matters to Anodunos

At Anodunos (meaning "without pain" in Greek), we've built our mission on education and advocacy to bridge critical gaps in pain care. Through the Anodunos Method, we educate and train Pain Navigators and healthcare providers to understand collaborative, evidence-based approaches to pain management.

But here's the truth: Without robust research that includes diverse patient voices, even the most comprehensive education and advocacy efforts face limitations. That's why we're not just supporting existing research—we're actively advocating for better, more inclusive research that reflects the real-world complexity of chronic pain. We believe research must include those with complex diagnoses, multiple conditions, and diverse lived experiences—not just the "ideal" participants.

The U.S. Pain Foundation's survey revealed:

This isn't apathy—it's a massive communication failure.

The survey revealed why patients stay on the sidelines:

But here's what's heartbreaking: Many patients report being disqualified due to complex diagnoses or being homebound—the very patients who need breakthroughs most.

For parents of children with chronic pain, the data shows an equally dire situation:

What Patients Actually Want (The Survey Asked!)

The U.S. Pain Foundation's survey reveals clear research priorities from those living with pain:

Patients told us exactly what would enable their participation:

These aren't luxuries—they're basic accommodations that could transform research participation overnight.

While we advocate for systemic change in research accessibility and quality, we're not waiting. The Anodunos Method educational programs address many of the same gaps that keep patients from meaningful research participation:

Pain Navigator Education: We train individuals to help patients understand and coordinate comprehensive care teams, empowering them to navigate both treatment and research opportunities

Provider Education: Our training brings healthcare providers together to learn collaborative, multidisciplinary approaches—the same coordination needed for effective research

Evidence-Based Curriculum: Our educational programs ensure providers understand the latest pain science, including neuroplasticity, the biopsychosocial model, and the critical importance of patient participation in research

Advocacy for Better Research: We advocate not just for more research, but for better research—studies that include diverse populations, complex cases, and real-world conditions

Empowerment Through Knowledge: By educating patients about their options and rights, we're preparing them to be active participants in both their care and in research that actually represents them

Research Design Advocacy: We advocate for patient involvement in research design from the start, ensuring studies address questions that matter to those living with pain

Through education and advocacy, we're pushing for a fundamental shift in how pain research is conceived, conducted, and communicated.

The Broken Discovery Pipeline

How do patients currently find research opportunities?

This haphazard system means groundbreaking studies go unfilled while patients who could benefit never know they exist.

For Healthcare Providers: With only 38% of patients learning about research from providers, you are the critical link. Make research discussions routine, not exceptional. Consider joining our Anodunos Method educational programs to learn collaborative approaches that benefit both clinical care and research participation.

For Researchers: Your studies need the voices of those with complex diagnoses, those who are homebound, those with multiple conditions—not just the "ideal" participants. Partner with education and advocacy organizations, such as the US Pain Foundation, to help prepare communities to participate meaningfully in research.

For Healthcare Organizations: Invest in education and infrastructure that support virtual participation and remove logistical barriers. The 85% willing to participate need education and support. Explore educational programs, such as the Anodunos Method, that can prepare both providers and patients for research participation.

For Policymakers: Fund research that reflects the real-world complexity of pain. Support educational initiatives that prepare patients for research participation. Recognize and support advocacy organizations working to bridge the gap between patients and research.

For Employers and HR Leaders: Your employees with chronic pain want to contribute to solutions. Support their participation with flexible schedules and understanding. Consider partnering with educational programs to help your workforce understand their options for pain management and research participation.

The U.S. Pain Foundation's data reveals an extraordinary opportunity: 85% of adults and 91% of parents would consider participating in research with the right support.

We're not facing a lack of willing participants—we're facing a system that wasn't built for the people it's meant to serve. At Anodunos, we believe education and advocacy are key to bridging this gap.

Download the full report: Chronic Pain Research Participation: Gaps, Barriers, & Opportunities.

Take action: Share this data with your network. Every share brings us closer to inclusive research.

Use your voice: If you live with chronic pain, ask your provider about research opportunities at every visit.

For researchers: Reach out to the U.S. Pain Foundation and education/advocacy organizations like Anodunos to connect with prepared, informed patient communities.

Learn about pain education and advocacy: Visit Anodunos.com to discover our educational programs that train Pain Navigators and healthcare providers in collaborative, evidence-based approaches to pain management.

For providers and advocates: Explore our Anodunos Method training programs to become part of the solution through education and advocacy that advance clinical excellence and research.

The future of pain treatment depends on research that includes everyone affected by chronic pain. At Anodunos, we're committed to being part of this transformation through education and advocacy—training providers, empowering navigators, educating patients, and advocating for better, more inclusive research that reflects the true complexity of chronic pain. This November, let's bridge the 89% gap together.

What barriers have you or someone you know faced in accessing research? How can we advocate for better research design? Email certification@anodunosmethod.com to share your story.

About Anodunos: We're an education and advocacy organization working toward a world without pain. Our Anodunos Method trains Pain Navigators and healthcare providers to understand and implement collaborative, evidence-based approaches to pain management. Through education, we empower patients and providers to work together effectively. Through advocacy, we push for better, more inclusive research that serves all people living with chronic pain. Learn more at ano-dun-os.com.