A Patient Advocate Can Help You Get the Medical Care You Need—Here's How to Find One
You may have seen this viral comic strip panel: A fat person runs into the ER with a huge wooden stake sticking out of their chest, saying "Doctor! I've been impaled!" Eyes glued to his medical chart and never bothering to look up at the patient, the doc says, "Well, maybe you'll feel better if you lose some weight."
The comic is funny because it's actually true. Studies show that fat people get worse care from doctors than their slimmer counterparts, are denied testing that thinner patients get, and have symptoms of cancer, scoliosis, and other serious illnesses chalked up to their weight. But people living in larger bodies hardly have it the hardest when it comes to health bias and disparities. Black women over 50 are twice as likely to die from breast cancer than white women with the same type of cancer, according to the American Cancer Society. And a third of transgender patients say they've been denied treatment or have been verbally harassed at least once during a medical appointment, while others have experienced sexual or physical harassment from their health care provider.
Such studies and surveys make it clear why culturally competent care—when a health care system provides for patients with diverse values, beliefs, behaviors, culture, and language—is so increasingly important. While the medical community at large is working its way toward cultural competence, some members of marginalized groups are seeking out patient advocates to help them navigate the system as it exists right now.
What does a patient advocate do?
A patient advocate, sometimes called a patient navigator, can steer you to a doctor that will take your insurance, or connect an uninsured person to the right provider. They can help you understand your diagnoses and treatment options, stay with you in the ER to help you communicate your needs to the doctor and nurses, act as a translator between you, your medical team, and your family, and even help you stand up for yourself with providers who you worry simply aren't listening.
For example, a navigator like Rosemary Thomas, MPH, associate director for the Penn Medicine Program for LGBTQ Health, can make sure that a trans patient's provider uses their proper name and pronouns, is well-versed in hormone therapy if that is something a patient is interested in, among other types of gender-affirming care. "And that's just the provider," Thomas tells Health. "Will the office staff treat you the same way? Is there a non-gendered bathroom, or will anyone bother you if you go to a gendered bathroom? If I work 9-to-5 and am not allowed time off, when do I go to my doctor's appointments? How do I schedule an appointment if I miss out on work and it counts against me, or I don't have money for transportation?" Thomas and her team of volunteer health advocates brainstorm solutions with patients to make sure they access the care they need.
Unfortunately, our health care systems are not set up to support trans people, Thomas says. "We need to have folks that can help them navigate the system and ensure they get connected to affirming and quality care to reduce health care disparities in that community," she explains.
A patient advocate can not only help ensure that you get the care you deserve from your medical provider, but they can also take notes and assist you in remembering and processing important health information. "We take into appointments our own fears and anxieties, and the appointments themselves are often too short to address everything that needs to be addressed," Kim McIlnay, a certified patient advocate and former family physician in Folsom, California, tells Health. "We're not always clear what happened, what we're supposed to do next, or when we're supposed to go back."
McIlnay sought certification in patient advocacy work once she stopped practicing medicine due to complications from multiple sclerosis. She had several life-threatening emergencies during her first years after being diagnosed with the condition, and she realized she may have died if her background as an MD hadn't trained her to navigate the health system. The experience prompted her to help others do the same thing. When physicians are strapped for time, for example, McIlnay knows how to communicate the most important parts of her patient's medical history accurately and succinctly—a tall order if a patient is feeling anxious or unwell during an appointment. "Having an extra set of eyes and ears there that also has medical training can be really helpful," she says.
A personal experience also prompted Oreletta Garmon, a navigator at Equal Hope in Chicago, to enter the field of patient advocacy. Equal Hope is an organization dedicated to eradicating health disparities. "A lot of women, especially African American women, feel that they don't mean a lot to their physicians and their team," Garmon tells Health. Without an advocate, she says, some fall through the cracks of overcrowded community hospitals, don't get the kind of information they need after a cancer diagnosis, or refuse to go back for treatment.
"I lost my first cousin to breast cancer," Garmon says. "She had good, private insurance—she worked for a bank. But she didn't have anybody to advocate for her. She didn't have anybody to explain the full benefit of going to treatment as opposed to...well, she let her breasts rot off. That really hit home."
Garmon's work is full-spectrum: She accompanies nervous patients to their mammograms (which are free through Equal Hope), she helps clarify their biopsy results, she fights for uninsured patients to have access to Medicaid, and she finds alternative routes for undocumented patients. All of her services are free. She sometimes finds out about her patients' diagnoses before they do, and she coaches them through talking to their doctors so they can fully understand their results. She's watched her patients die from breast cancer as she visited them at the hospital every day and attended funerals with their families.
"As an African American woman, I've been in a doctor's office as a patient and been judged and stereotyped," says Garmon. "I went through all that humiliation. With a patient advocate, you have someone to literally hold your hand and walk you and your family through the process."
How to find a patient advocate
"Most hospital systems have a patient advocacy department, so those are always good places to start," SJ Thompson, an eating disorder recovery coach and medical advocate for fat patients seeking equitable health care, tells Health. Part of Thompson's job is to help find weight-neutral providers for fat patients looking for doctors versed in the Health at Every Size approach, who make a concerted effort to provide compassionate, unbiased medical care.
How much does a patient advocate cost?
It depends. Some health advocates who are affiliated with nonprofit or university organizations like Equal Hope and the Penn program work on a volunteer basis. Independent advocacy professionals like Thompson and McIlney charge varying rates for their services—sometimes on a sliding scale according to a client's income. Some advocates work directly for a hospital or even an insurance company, and they would likely be covered by insurance; check your policy to find out. McIlnay says she has also heard of some employers offering it as a free benefit to employees, and for a time, she was contracted to provide advocacy as a benefit to graduate students at a particular school. It's worth asking your employer to find out.
What qualifications should I look for?
There is no specific license to be a patient advocate, though some are certified by the Patient Advocate Certification Board, and it's important to vet any candidates you consider. Ask your patient advocate how long they have been working in health care and what their previous and current clients were like. Present them with a list of the concerns you want to address. For example, if you are transitioning and need help accessing hormone therapy, you'll want someone who has worked with trans patients before and has extensive knowledge of gender-affirming care. If you have chronic pain that's been repeatedly dismissed, look for someone who deals specifically with chronic pain and invisible illnesses.
All of the patient advocates we spoke to agreed that there are major differences in the way patients who are not average-size, white, cisgender English speakers are treated in the American health care system. Sometimes the quickest way to access culturally competent care is with a professional navigator. "The only way that health disparities are ever going to change is if the system changes, and until then, we need patient advocacy," Thompson says.