7 Times You Should Hire a Patient Advocate (and When It’s Unnecessary)

Updated: Feb. 25, 2021

A long term illness or extended hospital stay brings a host of concerns that are often confusing and frightening. What if you had someone in your corner to help navigate treatment options or deal with insurance companies? Here's everything you need to know about working with a patient advocate.

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patient advocate walking with patientJacob Lund/ShutterstockWhat is a patient advocate?

A patient advocate can help in many ways depending on what you or your loved one needs. Someone with a chronic illness or several medical conditions will probably benefit the most from the services of a patient advocate. Filling insurance claims, accompanying a patient to the doctor, relaying information to other family members, and scheduling doctor appointments, are just some of the many things a patient advocate can do. However, if a patient isn’t able to communicate or lacks decision-making skills, a patient advocate cannot step in to fill that role. “A professional patient advocate is not a substitute decision-maker for the patient and cannot speak on behalf of the patient unless he or she is also a legally recognized health care proxy or is a court-appointed guardian,” says attorney Johannah “Jo” Kline, author of The 60-Minute Guide to Health Literacy. (Here are the secrets to finding a doctor you can trust.)

Does your advocate work for you?

Patient advocates work for you but they can be employed by an insurance company, a hospital, a private company, a non-profit, or be self-employed. “When a patient is hospitalized, most hospitals in the country offer patient advocate services,” says Olatokunbo Famakinwa, MD, internal medicine physician and pediatrician (better known as Dr. Toks). “If a patient feels confused or has concerns about their care they should feel empowered to ask to speak to a hospital-based patient advocate.” Your insurance should cover this type of advocate.

However, some patients may not feel a hospital-based patient advocate has their best interests at heart and can hire a private, paid patient advocate. Their fees will vary, depending on the services provided; most charge by the hour. To have an advocate accompany you to the doctor’s office may cost around $75, but an extended hospital stay could cost hundreds more. When hiring a patient advocate health literacy is a must, says Kline. “That means knowing how and where to access information about preventive, routine, emergency, or end-of-life care, whether that’s doing research before the appointment or not leaving the provider’s office until all treatment options are fully understood.” (Here are 75 secrets nurses wish they could tell you.)

Patient advocates and your doctor

It’s important to note, a patient advocate shouldn’t be discussing any informationwhether it is test results or treatment options—with your doctor or other healthcare professionals without your permission. “As a physician, I have spoken to patient advocates directly about a patient’s care. However, this can only be done with the permission of the patient to share medical information, in order to protect the patient’s privacy,” says Dr. Toks. She makes sure to speak with the advocate and patient present so the patient can be involved as much as possible. Make the most of your doctor appointment with these tips.

You’re not happy with your doctor

When you have a serious illness or will be hospitalized for any length of time, it’s important to have a doctor that you trust and feel comfortable with. When you’re not happy with your doctor, a patient advocate can help. “The PA can try to help a patient decide to them what is important. It can be something like age, gender or the wait time but whatever it is, it should always be about the patient and what the patient wants,” says Ilene Corina, president, Pulse Center for Patient Safety Education & Advocacy. A patient advocate can have the conversations most of us would like to avoid and help resolve the issue or in some cases, help find another doctor for the patient. If your doctor does this, you need to find a new one.

Keeping the patient safe

When you’re sick, lack of energy or even sedation makes it difficult to communicate with the hospital staff about safety issues. Or maybe you don’t want to complain about things like the cleanliness of your room or staff members washing their hands before they treat you. A patient advocate should be aware of things like room cleanliness, nurses responding to bells, and introducing themselves or answering questions, especially when you can’t speak up for yourself. “Our goal is to keep patients safe when hospitalized or using the doctor,” says Corina. “Is the patient understanding information? Are the nurses explaining the medication? Are the staff asking the name and birth date and washing their hands? These are things I personally look for,” says Corina. Here’s what you need to do to make your next hospital stay more comfortable.

Prescription confusion

Taking prescriptions is serious, especially when a disease or long-term illness requires multiple medications. A patient advocate can help with concerns about allergic reactions, fear of drugs becoming addicting, or interacting with other medications. “A common reason that patients do not follow their physician’s advice concerning medications is related to fear, and the fear is often due to insufficient or incorrect information,” says Rachel S. Boggs, RN, clinical consultant. A patient advocate may retrieve more info from the doctor or pharmacist so the patient doesn’t have to conduct hours of research or spend time on the phone trying to get answers. Be sure to ask these important questions before taking prescription meds.

Searching for a specialist

It’s unnerving enough to learn you have a health issue that requires a specialist, but now you also have the daunting prospect of finding a good fit. Your provider may give you a few recommendations, but how do you choose one that’s right for you and in your insurance network? A patient advocate can help. ‘Not only can the HMC care advocate gather information to help with identifying the specialist, but the care advocate can schedule the appointment too if that would be helpful to the patient,” says Boggs. This is how you know you can trust your doctor.

Navigating clinical trials

A clinical trial can offer hope when you’re facing a serious illness but often it can be difficult to understand. Ariella Chivil, a former patient turned advocate was diagnosed with Hodgkin lymphoma in 2010 and is now cancer-free after participating in a clinical trial. “My introduction to clinical trials was guided by my oncologist, who acted as my advocate alongside my nurse,” says Chivil. “Once I exhausted the options at my hospital, I had to act as my own advocate in order to navigate the clinical trial landscape. I had to determine for myself which protocols I would prioritize based on my own research and decision criteria.” Now, as a patient advocate, Chivil guides and supports patients by translating the often-confusing world of clinical trials. “I help them figure out if they might qualify for the trial or what questions they should ask their oncologist to figure out if they qualify for the trial. I also take some time walking them through the steps of the clinical trial sign up process as well as helping them pick the trial site that best meets their needs.” These good deeds help cancer patients the most.

Securing financial resources

Whether you’re participating in a clinical trial that is hours from home or need transportation to your doctor appointment, a patient advocate has the inside scoop on how to help with the costs. Chivil helps her patients find alternative ways to pay for travel and accommodations when the clinical trial site is far from home. “Usually a nonprofit specific to a patient’s disease type can provide some financial resources or a group like corporate angels can give them a seat on a flight for free,” says Chivil. Errors in billing or filing insurance claims can be passed to the patient advocate as well. They are keenly aware of how to appeal the hospital for billing mistakes and how to get a lower overall cost for care. For routine appointments, patient advocates know which insurance plans may offer reduced or free transportation. (Check to see if Amazon Pharmacy can save you money on prescription drugs, too.)

When don’t you need a patient advocate?

“There is no need for a professional patient advocate if a person is able to process information and make informed medical and care decisions and if there are family members or close friends available nearby to assist with the logistics of the person’s health care management,” says Kline. Keep tabs on your aging parents with this technology.