When Relief Requires Research: From Patient to Advocate

By Mark Odlum

Reggie Barnes knows all too well the necessity of research and experimental methods when other treatment options have been exhausted. He lives with a tangle of conditions that don’t just cause him pain—they also make treating his pain more difficult.

His long, often-isolating journey for relief has evolved into something transformative, for both himself and the broader community of patients navigating similar challenges.

As the director of patient partnerships at the Autoimmune Registry Inc., which collects and disseminates patient-reported data on autoimmune diseases, Reggie plays a pivotal role in connecting individuals to research, empowering them to share their stories, and helping shape a more inclusive and representative health care system.

His work is deeply personal: Reggie, who lives in Corona, California, is also a patient member of the registry. He knows firsthand what it means to endure physical hardship that is often invisible to the rest of the world—and the power of contributing to research to bring about change.

A COMPLEX MAZE OF DIAGNOSES

Long before his involvement in advocacy and research, Reggie was living with intractable pain from a range of conditions: lumbar radiculopathy, lumbar stenosis, peripheral neuropathy, and bilateral knee arthritis. These conditions affect his ability to move, sleep, and enjoy daily activities—like his beloved walks in nature. Making matters more complex, he also lives with three rare autoimmune diseases, including autoimmune encephalitis, a serious condition that can cause painful seizures and cognitive decline.

His conditions required the assembly of a team of 14 specialists to coordinate treatment. For years, the complexity of his overlapping diagnoses meant trial and error, a frustrating lack of clarity, and conflicting or failed treatments.

Yet he knows that persistence can pay off. After finally gaining some control over his seizures through medication and collaboration, Reggie, now 64, was able to address other layers of pain and begin sleep restoration—an outcome he hadn’t experienced in years.

PAIN RESEARCH THAT EMPOWERS PATIENTS

Reggie’s journey shifted in 2022 when Ingrid He, director of research at the Autoimmune Registry, invited him to the RARE Health Equity Summit, hosted by rare disease advocacy nonprofit Global Genes. There, a conversation with Ebony Madden, PhD, a genomic researcher with the National Human Genome Research Institute and the National Institutes of Health (NIH), opened his eyes to the ways that research can pave a path to better care.

One of his first steps was joining the NIH All of Us Program, which combines clinical trial methodology with the power of a national patient registry, gathering extensive self-reported health data to support and accelerate research and medical advancements. That led him to participate in the Nutrition for Precision Health study, an All of Us research initiative exploring how diet affects inflammation and chronic disease.

“When you’re in the study and have to track everything you eat, you become accountable,” Reggie reflects. “I cut out fast food, read every food label, and started cooking at home with my family. It really did reduce some of the pain.”

His experience underscores how research isn’t always about new treatments—sometimes it’s about behavioral insights and lifestyle changes. The study showed him how the nutrition choices he made could improve or worsen his symptoms. “Food became a form of medicine for me,” he says.

THE POWER OF REGISTRIES: DATA THAT MAKES A DIFFERENCE

Reggie also joined the Autoimmune Registry in 2022. When he filled out his first patient survey, he saw it as another way that his personal experiences might contribute to future research. Now, through his work at the registry, he’s helping others do the same, championing the importance of patient data in shaping research agendas.

The Autoimmune Registry allows individuals with any autoimmune condition—there are more than 140—to opt into surveys, update their data over time, and get matched with research opportunities such as clinical trials. The real-world data collected about conditions, symptoms, treatment experiences, and environmental or social factors is used to support research, patient care, and public health initiatives.

Reggie’s dual role as both a staff member and patient participant gives him a rare 360-degree perspective on how registries can shape the future of care.

“It’s patient-driven data,” he emphasizes. “That kind of information is gold for researchers. When patients log in, they can share their experience in their own words—and that’s powerful.”

Registry participation can also reveal important health insights for the individuals participating. For instance, once Reggie updated the Autoimmune Registry’s diagnosis and treatment surveys with his new diagnosis of autoimmune hepatitis, he learned—and later confirmed with his medical team—that the increased vulnerability of his liver made it too risky to continue using OTC pain medications to manage his other conditions’ symptoms.

“Being involved in research isn’t scary,” he shares. “It’s empowering. It’s how we find better treatments.”

Reggie collaborates with initiatives focused on centering patients in research, including the Patient-Centered Outcomes Research Institute (PCORI) and the AGING Initiative’s Insights and Perspectives from Patients and carePartners Panel (IP4). He is a vocal advocate for ensuring that pain research reflects the diversity of experiences—including racial, age-related, and socioeconomic dimensions.

“In the minority community, we have to step up,” he says. “If we want treatments that reflect us, we have to be part of the research.”

A VOICE FOR THE SILENCED

Reggie’s journey has not been without stigma or systemic hurdles. In a searing personal account published in Academic Emergency Medicine, he recounted being denied appropriate care for his complex conditions—forced to provide a urine sample through a catheter insertion rather than receiving emergency treatment for his seizures. “I brought my medications, my paperwork—everything,” he recalls. “But I ended up in a straightjacket instead of getting the treatment I needed.” In hindsight, he shares, he believes this treatment was due to the color of his skin.

That experience galvanized him further. Today, he serves as a committee member for the Partnership for Quality Measurement, an entity assembling clinicians, patients, and other experts to provide health care quality reviews and recommendations to the Centers for Medicare & Medicaid Services (CMS). He helps establish national standards for pain treatment and medical safety, lending his voice as an individual with lived experience to hold health care systems accountable in offering effective, patient-centered care.

He also seeks to facilitate better patient-provider communication through his work as a patient adviser with the California Pan-Ethnic Health Network and the Brain Inflammation Collaborative.

“Doctors and patients often speak different languages,” he says. “We need to teach patients how to tell their story in those short minutes they get with their doctors. That’s how you get better care.”

LAYERS OF PAIN, LAYERS OF PARTICIPATION

One of the most unique aspects of Reggie’s story is how deeply embedded he is in the pain research ecosystem.

As a patient, he lives with complex pain and rare conditions that hamper treatment options.

As a participant, he contributes data—and his voice—to national research studies and trials.

As a professional, he leads registry efforts that bring other patients into the fold.

As an advocate, he influences policy and medical practice standards.

“Everyone has something to contribute,” Reggie says. “Whether it’s sharing your story, logging your symptoms, or joining a trial—it matters.”

STRIVING FOR INCLUSIVE CARE

Reggie’s mission is clear: help others avoid the silence, confusion, and isolation he once felt. He wants the health care system to recognize pain as a valid condition—and for research to reflect its complexity.

“My experience of being diagnosed with my rare condition was 15 years of not being believed and searching for treatment,” he says. “If I can help in any way to shorten this experience for others, I want to.”

Through the Autoimmune Registry, NIH research, and his tireless advocacy, Reggie is making sure that every person living with chronic pain knows they are not alone—and that their pain, their data, and their voices matter.

“We’re not just statistics. We’re people,” he says. “And we deserve care that sees all of us.”