The power of speaking up: What is health care advocacy?

Savannah Kaspar ’19, MHA ’21 had grown used to the uncertainty that comes with unexplained symptoms. Each doctor’s visit ended the same way—with reassurance that nothing serious was wrong. At 26, she was told her discomfort was likely a type of inflammatory bowel disease. But something inside her insisted otherwise.

Months earlier, in May 2023, subtle changes in her health had begun to escalate. At-home remedies recommended by her physicians did little to help, and repeated visits brought few answers. The more she was told not to worry—that she was too young and low-risk for the more serious condition she feared—the more convinced she became that she needed to.

Drawing on what she’d learned about advocacy at the Texas A&M University School of Public Health, Kaspar decided to trust her instincts and ask for more.

She pushed for additional testing—insisting that her concerns be taken seriously.

“I just had this feeling something was wrong,” she said. “I just kept having anxiety about it and a gut feeling. I kept pushing for the colonoscopy—I needed to make my voice heard.”

That persistence proved lifesaving. When her physician finally ordered the colonoscopy, it revealed not a minor condition, but colon cancer. Without support from loved ones and advocating for herself, Kaspar said that diagnosis might never have come—or it may have come too late.

After a major surgery and four rounds of chemo, she entered remission in February 2024. She said the people at MD Anderson—where she worked at the time and now serves as a program coordinator—are a pivotal part of her story. The cancer support group for employees helped her make informed decisions about her care, and now she gives back on a volunteer basis as an advocate and a mentor for other people who have just received a life-altering diagnosis. She said she tries to make each patient interaction a positive one and provide a welcoming environment in any way she can.

“I always give a smile because I know being in those hallways can be very scary and overwhelming,” Kaspar said. “So even if I can offer something as small as helping someone with directions, I always want to be part of a support system for those patients because I needed a support system when I was going through treatment too.”

The importance of support and teamwork

Much like Kaspar, Kim Belcik, PhD, APRN, FNP-BC, CNE, family nurse practitioner and clinical associate professor at the Texas A&M University College of Nursing, is all too familiar with providing comfort and support to patients during life-altering moments. As a practicing nurse, she always tries to make sure patient needs are met—and now, she teaches the next generation of care providers about their pivotal role in patient advocacy.

“Patient advocacy means being a conduit or being that person who listens and gives power to them,” Belcik said. “And I feel like that’s a lot of what nursing is. Nurses already learn how to speak and how to be that intervener for even the smallest things with all their patients, whether they’re a direct care nurse in the hospital, out in the community, or a nurse practitioner. So, when I teach students about it, I tell them they already know what that feels like.”

Belcik said listening to patients like Kaspar is key to providing quality care, but education is just as important. Many patients arrive with ideas about their symptoms and possible diagnoses and treatments, often shaped by information they’ve found online. She said advocating for yourself and loved ones with quality research is important, but balancing your research with what your provider is presenting is key, although sometimes difficult.

Times like those, Belcik said, is when it’s important for the provider to learn more about where their patient is coming from and address their concern.

“I run into it all the time, and you just have to say, ‘Okay, so tell me more,’” Belcik said. “’Where’d you get your information? What symptoms are you having?’ You can’t make assumptions based on what they look like or anything else. That’s the person in front of you, and now you get to find out what it is that’s bothering them.”

While nurses are an important part of the advocacy team, Belcik also emphasizes the importance of having a loved one as a second set of eyes and ears. Sometimes when facing a diagnosis—even a seemingly minor one—a patient’s mind might wander or they may miss something the provider says. Having an extra person there to take notes, ask questions and follow up on treatment plans is always beneficial, she said.

However, providing advocacy for someone else is not always easy. Belcik said the patient might not know how to voice their questions or concerns, even to loved ones. An easy place to start is by asking them to list one to three things they want to talk about the most. If they need prompting, she said to ask pointed questions like, “What about that new medication they mentioned; do you want to know more about that?”

Making your voice heard

To help herself navigate difficult conversations, Kaspar began documenting her concerns and brought notes to each appointment. This preparation, she said, made her feel more confident when speaking with providers and answering tough questions. She also took an active role in her care, researching on her own and arriving with questions informed by both her care team’s guidance and her own findings.

The Joint Commission—an independent accreditation organization that helps to set standards for medical organizations for safe, high-quality and patient-centered care—has a series entitled Speak Ups that aims to provide patients and advocates with information on various health-related topics. These provide easy-to-read infographics and animated videos for people of all ages and reading ability. Belcik said accessible content like this is key in ensuring people make the right decision for themselves or their loved one.

“It’s important to have conversations with your provider about what you are feeling and what you’ve found in your own research and make educated decisions within those conversations,” Belcik said. “Health care is so personal, but we can’t help unless we know what you’re experiencing.”