Veteran Patient Advocate

Summary: Veteran Voices in Research showcases the value of Veteran collaborators across recent history, and how their experiences, values, and expertise improve the quality, relevance, and impact of VA research. This issue, "Kathryn Washington, Veteran Patient Advocate," profiles Kathryn Washington, an Army Veteran, patient advocate, and prolific collaborator in VA research.

The first symptoms of sarcoidosis came for Kathryn Washington while she was still in training as an Army medic during the Gulf War, but it would be years before she would learn much about the inflammatory condition that presents as tiny lumps of immune cells, or granulomas, in parts of the body. Because symptoms present differently among people who have it, sarcoidosis is difficult to diagnose-and is often misdiagnosed as an allergic reaction, infection, autoimmune disorder, or even cancer. After ten years of navigating the revolving doors of referrals and handoffs, suffering symptoms on her skin and in her lungs and eyes, Washington finally underwent a biopsy that revealed granulomas.

"Clinicians, obviously, they know more than us," she said, "but sometimes they don't live with our symptoms. It's hard to articulate that. And because of that, in the time it took to get my diagnosis, I learned to speak up."

Because she'd grown up among people whose access to healthcare was limited by systemic barriers, Washington decided to speak up not only for herself, but also for other patients. "Anything I've had any kind of problem with," she said, "I've learned to use as a way to educate others and myself and find out what can be done later-how it can help other Veterans, clinicians, and researchers."

Washington began her engagement with VA research through the Chronic Pain Veteran Engagement Panel (VEP), where she collaborated with Pain/Opioid Consortium of Research (CORE) researchers on study design, recruitment, implementation, and dissemination. Since its inception, the Chronic Pain VEP has consulted on nearly 100 pain- and opioid-related research projects. "The researchers were intentional about including a range of Veteran perspectives," she said, "so the study would actually reflect the population it was meant to serve. That stood out to me-it showed how much stronger the work becomes when those perspectives are included from the beginning."

In the meantime, Washington has joined other Veteran groups that help to shape VA Health Systems Research (HSR), the research portfolio focused on the quality and efficiency of VA care. She serves on the ACCENT Veteran and Caregiver Engagement Panel (VCEP), the Women's Improvement Network, and the Growing Rural Outreach through Veteran Engagement (GROVE) Center.

The views expressed in this publication are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.