Mallory Frazier, BCPA, a board-certified patient advocate, is something of a medical mystery solver. She used her research skills to get to the bottom of her own rare disease and now helps others navigate the healthcare system.
“Women with chronic illnesses have often been in pain daily for decades by the time they reach midlife. Some have accepted that they simply have to suffer — that this is their lot in life,” Frazier said. “An advocate can help immensely with this.”
When Frazier met Jeanine*, a woman in her early 40s, Jeanine had been diagnosed with multiple chronic conditions that disproportionately affect women, including hypermobile Ehler’s Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS) and chronic migraine, among others.
Jeanine had trouble spending time on a phone, looking at a screen or even being upright. She needed help communicating with multiple healthcare providers (HCPs) and finding new treatments.
Frazier got to know Jeanine’s HCPs and now makes all of her appointments, handles her paperwork and researches treatments to help Jeanine make informed decisions.
“Unfortunately, with rare disease, many clinicians are not knowledgeable about the off-label uses of medications and treatments that can drastically improve quality of life in these patient populations,” Frazier said. “Many patients find out about them through online messaging boards but do not know if they are legitimate treatments. This is where a knowledgeable advocate comes in: We can research the legitimacy and find licensed, credible providers.”
Since they started working together in 2024, Frazier said that Jeanine has less stress, improved mobility and better sleep.
What is a patient advocate?
You may wonder, what does a patient advocate do?
Patient advocates are professionals who help you navigate healthcare and health insurance. They may have worked in a healthcare administration or clinical role, or learned about healthcare through their own experience as a patient or caregiver.
No matter how they get into patient advocacy, these professionals are like healthcare guides. They know how things work and give you the best chance of getting the care or coverage you need. Patient advocates can facilitate communication between patients, families and HCPs. They can fight administrative battles and break through red tape. They can attend appointments in person or remotely. They might help you with a small, specific issue or work with you over time.
You might find patient advocates working in hospitals or clinics or even insurance companies. No matter how helpful or supportive they are, they answer to the organization that pays them. That means if you need something that the organization doesn’t want to provide, the advocate may not be able to help.
Independent patient advocates work differently. They work only for the patient (or someone the patient authorizes to represent them). Their only job is to support the patient’s goals, needs and wishes.
Who needs a patient advocate?
Anyone can benefit from a patient advocate, especially people with complex healthcare needs or frustrating health insurance situations.
For example, if you’re feeling dismissed or overwhelmed, a patient advocate can be invaluable. They can serve as an extra pair of eyes and ears, monitoring your situation and speaking up on your behalf. A patient advocate can help you be taken seriously, and they can be the glue between your different HCPs so nothing falls through the cracks.
If you get a medical bill you can’t afford or don’t understand, a patient advocate can review and try to resolve it. And, if your health insurance company denies a medicine or service you need, a patient advocate can help you file an appeal or get the right paperwork in place.
Read: 5 Steps to Take When Your Healthcare Provider Won’t Listen to You >>
How to get a patient advocate
If your hospital or clinic offers you a patient advocate, you may as well start there and get their help (it’ll likely be free). Just keep in mind that these resources work for the hospital or clinic, not for you.
If that help isn’t available — or isn’t helpful enough — you can hire a patient advocate for yourself. You can find independent advocates through various patient advocacy directories or by searching for independent patient advocates online.
Search for patient advocates with the specific expertise you need. There are patient advocates who specialize in fighting medical bills or health insurance denials. Others help navigate clinical care, sometimes focusing on specific conditions, such as cancer, or specific populations, such as women.
Like Frazier, some advocates are board certified through the Patient Advocate Certification Board. These advocates (known as BCPAs) must meet certain standards, pass a rigorous exam and follow patient advocacy ethics. Many qualified advocates are not board certified, but the BCPA is a nationally recognized standard.
How to choose the right patient advocate
Choosing a patient advocate is like any other relationship: It has to feel right. Many advocates offer a free initial consultation so you can get an idea of whether it’s a good match. If offered, use that time to figure out if the advocate has experience in your situation. Do they really listen and understand you? Do you feel comfortable with them? Do you feel confident in their expertise?
Ask how they work and determine whether that suits you. Some patient advocates have a set process, or a minimum number of hours you sign up for, while others may be more flexible. Either style can be effective. What’s most important is that it works for you.
Some patient advocates will go with you to appointments or meet with you in person. Others will do all their work with you and on your behalf remotely. Either way can work, especially if you find an advocate you click with, but again, you have to be happy with the arrangement.
What does it cost to hire a patient advocate?
Some patient advocates will charge a set fee for specific kinds of work, but most work on an hourly basis. Advocate costs can vary widely, from around $100 an hour or less to $300 an hour or more. Some advocates charge their fees up front, and others may bill you after the fact. Always ask for available options. You may be able to get a lower hourly rate if you need more hours.
Working with an advocate remotely could cost less. Advocates based in big cities on the coasts often charge more than advocates based in the Midwest or in smaller towns. There may be no difference other than the cost of living, so you may be able to get high-quality support from someone who lives in a less expensive place.
If you have a financial hardship, some private advocates offer pro bono services or adjust their fees on a sliding scale. If you simply can’t afford a private advocate, some nonprofits offer assistance. The Patient Advocate Foundation offers help with co-payments and free care management resources. Dollar For helps people apply for charitable care from hospitals.
How to become a patient advocate
If working as a patient advocate appeals to you, here are some tips to keep in mind:
- You must have healthcare knowledge from past work experience or as a patient or caregiver.
- If you want to work as an independent patient advocate, understand the role: You work for and represent the patient.
- There are many training programs that prepare to practice as an independent patient advocate. You don’t have to figure everything out on your own.
- There’s only one nationally recognized board certification for patient advocates.
There is a growing community of independent patient advocates out there.
The bottom line
Anyone can benefit from having a healthcare champion. While patient advocates can’t guarantee results, someone fighting on your behalf can go a long way to improving your odds of success.
Most importantly, remember that you don’t have to navigate your healthcare alone.
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