Updated on 12.23.16

What’s a Patient Advocate – and Should You Have One?

Preventable medical error is now the third leading cause of death in the United States, after heart disease and cancer, according to a recent study from Johns Hopkins. Another report, this one published in the Journal of Patient Safety, showed that an estimated 440,000 people die each year in this country as a result of medical error.

These concerning statistics are just two reasons why one might want to consider hiring a patient advocate, a person whose job is to help patients navigate the healthcare landscape and ensure they receive the best care possible.

The complexities of the health care system and health insurance can be stressful, confusing, and overwhelming even under the best of circumstances — not to mention when you’re dealing with a serious illness.

The small but growing class of professionals known as patient advocates has emerged to help, providing guidance on everything from identifying a good doctor to reviewing potential treatment plans and staying on top of billing issues.

“People run into challenges choosing insurance. There’s the billing errors one inevitably stumbles into, and when one actually needs to access care, even getting an appointment can be enormously difficult,” says Ruth Linden, Ph.D., founder and president of Tree of Life Health Advocates, a company designed to help those with serious illness access the best possible care. “In addition, communicating with physicians can also be immensely difficult because often appointments are condensed into 15- or 20-minute time slots, and patients may have many questions that can’t be addressed in that short period of time.”

For all of these reasons and more, it’s important understand exactly what a patient advocate is and how one might help you.

Types of Patient Advocates and the Services They Provide

Some advocates specialize in specific areas of medicine or focus on assisting with a very distinct part of the health care process. For instance, there are registered nurses who offer individualized services like attending doctor’s appointments or researching potential treatment plans.

Other advocates work exclusively on the business side of healthcare, focusing on assisting you with the financial issues — such as cost of treatment, medical billing issues, and negotiations.

Still others specialize in providing advocacy for patients who go abroad for healthcare, or in assisting with aging life care or geriatrics.

The bottom line is there are advocates out there to assist with just about every facet of your health care journey, from attending consultations, to being at your bedside in the hospital.

“In some health systems and with some insurance companies and hospitals, patient advocates are offered. But what these people really are is customer service representatives. They’re not independent because they work for the organization,” explains Linden. “What we’re talking about is independent advocates. My clients rely on my being independent. The advice and the guidance and weighing of options that I assist with is all based on my client’s best interests, values, and goals.”

When Might You Need a Patient Advocate

If you or someone you love suffers from a chronic illness, or is in need of complex care, a patient advocate may be able to help in many ways.

In addition to assisting with the mountain of medical bills that often accompany illness, and identifying potential billing errors, an advocate can provide critical assistance with the implementation of treatment, including asking important questions, pressing to get answers, and coordinating care.

“If you’re the patient, you’re not necessarily in your best form — you may be in dire straights, in fact — so it’s hard for you to watch out for the pitfalls that may be happening,” explains David Halperin, director of communications for Pulse Center for Patient Safety Education & Advocacy, a New York-based non-profit that trains patients and families to be their own advocates, and also provides training for aspiring professional patient advocates.

Additional instances when an advocate might be warranted include when you have a major surgery planned, or if you’re someone who visits doctors regularly or receives treatment from multiple doctors.

“When you’re at a doctor’s appointment, it’s hard to remember to ask all the important questions and take notes at the same time,” Halperin adds. “If you have an advocate, whether it’s a family member or a professional, that’s one thing they can do is be there with you and take notes of everything that’s being said.”

Halperin also suggests designating an advocate before you fall ill, similar to the way people establish a living will (which is a written statement detailing your desires with regard to healthcare should you no longer be able to express informed consent.)

The Cost of a Patient Advocate

Because this is such a newly emerging field, there are no standards in terms of what such services should cost. Linden, who is based in San Francisco, says rates there can range from $135 to $225 per hour. But in other parts of the country, it’s standard to see rates around $75 an hour.

“It really depends on the costs of living in the area where you’re looking and what the market will bear,” says Linden.

How to Find a Good Patient Advocate

The field of patient advocacy is still growing, but it’s possible to find an advocate in your area by simply conducting a Google search, says Matthew Bahr, the Certified Healthcare Access Associate (CHAA) behind the blog The Patient Financial Advisor.

There’s also an online directory of private, independent health care advocates that lists professionals located throughout the United States and Canada. Called the AdvoConnection Directory, the website includes only those people who are members of the Alliance of Professional Heath Advocates.

No matter which route you choose to identify an advocate, it’s important to carefully screen the individual before agreeing to work with them. Review their skills, background, and expertise.

“Be sure to ask about their experience and what exactly they’ve done that could help you in your situation,” says Bahr. “I would always ask for references as well. Experience, in my opinion, is what you want in an advocate.”

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