Patient advocacy offers a helping hand through medical difficulty

In 2017, Charleston native Julia Pinckney was diagnosed with breast cancer. But that wasn’t the only difficult news for the family — her father was also diagnosed with cancer at the same time. They both underwent successful treatments, but their experiences were very, very different.

Her father’s experience was exceptional and he went through the entire process feeling confident and well-informed. Julia, on the other hand, states, “I was made to feel unintelligent, unimportant, and like I was little more than a profit center.”

Why the disparate experiences?

“My father has a friend who’s a physician,” Julia explains, “and he accompanied my dad to every appointment. That completely changed the dynamics of the experience. On the other hand, I have never felt more helpless or alone in my life.”

A 20-year veteran of the medical industry, Julia thought long and hard about the situation, and concluded the difference came down to the peer-to-peer dynamic catalyzed by the interaction of two medical professionals.

“I was assigned a course of treatment by my oncologist,” Julia explains, “but it was presented in a way that had me believing it was the only option. I was working outside of Charleston and considered having my chemo done there. After my consultation with them, I was shocked to find they offered an entirely different plan. Up until then, I never realized treatments for breast cancer were subjective. As it turns out, most cancer treatments are.”

Breaking through the jargon

The more Julia pondered the topic, the more she began to understand. As a subject matter expert to physicians regarding molecular assays as well as pathology and forensic DNA testing, she recalled how difficult it was to explain to a new friend what she did for a living.

“The medical terms and lingo from work were so ingrained in me,” she explains, “I’d find myself using them talking with someone who had no understanding of the basics.”

The other challenge to overcome is the well-known fact that physicians are required to handle an ever-increasing patient load — resulting in the mathematical reality that they have less time for each patient. There had to be a way to best utilize the one-on-one time with the doctor.

Over time, she developed a solution: She earned a board-certified Patient Advocate credential, and launched her new company AmbassaCARE, a patient advocacy firm focused on assisting clients navigate the complexities of the medical industry. The concierge service is appropriate for anyone dealing with a complex (or new) diagnosis.

“Our clientele falls within one of a few primary categories,” Ms. Pinckney explains. “but first and foremost we will be working with clients who see the value in having a medical professional accompany them to their various appointments. This made all the difference in my father’s cancer treatment experience, as his friend was able to ask educated, specific and insightful questions, then spend the time outside the physician’s appointment carefully explaining to my dad what had transpired … in layman’s terms. This gives confidence to not just the patient, but family members who want to know exactly what’s happening — and why.”

AmbassaCARE plans to offer more than “patient advocate” services. These services will include the offering of a healthcare professional to navigate the complexities of insurance; acting as a liaison between physicians and family members in a hospital setting; those needing assistance with complex discharge instructions; a variety of services to parents with an acutely sick child.

“Some people are intimidated by the idea of having a patient-advocate accompany them,” Ms. Pinckney says, “as if it will offend their doctor. Doctors are all about caring for their patients, and most would never view it as an insult — it’s what’s best for their patient. If you encounter a doctor who’s insulted at someone pressing him for more information, then that’s a crystal-clear indication you definitely need a patient advocate.”

All too often, the landscape of modern medicine causes people — even wealthy individuals — to view their insurance company as their physician. “My insurance won’t pay for it” has become a phrase that guides life-and-death decisions.

“AmbassaCARE is a concierge service,” says Ms. Pinckney. “In time I hope we’ll be able to provide services to a broader audience, but as a start-up this is an option for those who place their health above cost. Access to professionals with the needed level of education and experience isn’t inexpensive.” AmbassaCARE is currently recruiting physicians, RNs, physician assistants, and nurse practitioners to join the team. Those interested in learning more may email Julia at Julia.pinckney@ambassacare.com. Their website is AmbassaCARE.com.