Navigating the health-care system can be less daunting with a patient advocate by your side.
When questions arise about medical bills, treatment options, insurance claims, or undiagnosed symptoms, to whom do you turn for help? Doctors, nurses, loved ones—maybe Google? Professional patient advocates can steer you toward answers and offer help.
These professionals are also sometimes known as health advocates or patient navigators. While the profession is in its infancy, it is slowly gaining greater recognition as more people learn how patients can benefit from advocates’ services.
“There aren’t necessarily misperceptions about us, because most people don’t know that we even exist,” says Elisabeth Schuler Russell, founder of Patient Navigator consultancy in Virginia and president of the National Association of Healthcare Advocacy Consultants (NAHAC). “Just as many people now have a financial advisor, personal trainer, or life coach, more people are learning that they can hire a patient advocate with insider knowledge and direct experience about how the health-care system works.”
Patient advocates provide services that may include managing medical and hospital bills, filing insurance claims, choosing health or Medicare plans, finding the right doctor, challenging insurance denials, researching medical conditions, and accompanying you or loved ones to medical appointments.
The concept of patient advocacy dates back more than 100 years and gained some momentum in the 1980’s when Sarah Lawrence College first offered a master’s degree in health advocacy. In 1990, Dr. Harold Freeman at Harlem Hospital created patient navigator roles to specifically help cancer patients.
Since the pioneering efforts at Harlem Hospital, the concept of patient navigation or advocacy has grown beyond cancer and now encompasses services to help patients navigate through the complex health-care system.
The Affordable Care Act (ACA) most recently fueled the need for “insurance navigators” to help consumers research and enroll in health insurance exchanges. The ACA has also highlighted the dysfunction of the health-care system and showed the growing distance between people who need health care and people who provide health care, says Vicki Breitbart, director of the health advocacy program at Sarah Lawrence College in New York. “Patient advocates can help bridge that gap.”
Currently in the United States, there are an estimated 150 patient advocates, comprised of nurses, physician assistants, social workers, medical billers, insurance advisors, and caregivers whose personal experience helping parents or other loved ones with health-care decisions motivated them to get involved in the profession.
After a long career in the US Foreign Service, Elisabeth Russell entered the profession after helping her daughter cope when she was diagnosed with an inoperable brainstem tumor. Knowing firsthand how difficult and frightening it was for her family to navigate the medical system, Russell pursued a new career path after her daughter recovered.
Patient advocate Stacy D’Alessandro worked in the health-care field for many years on the business side but then decided to get more involved in helping patients. She has helped clients resolve insurance denials, make appeals, negotiate bills, and much more.
D’Alessandro also understands the unique needs of the arthritis community. She has arthritis as a result of ulcerative colitis. Through her consultancy, Serenity Care Patient Advocate Services in southern New Jersey, she has helped several patients who were not correctly diagnosed. She herself was misdiagnosed, so she can relate to the frustration many patients face.
Russell has also helped many patients get properly diagnosed. She calls them medical mystery diagnosis cases. “These types of cases get thrown on a specialist merry-go-round with no single doctor looking at all the symptoms, and the patient goes undiagnosed for years,” she explains. “We try to figure out what the doctors have missed and see if we can connect the dots.”
Working with an internist and a researcher, Russell and her team examine patients’ medical records, conduct in-depth research, and come up with potential diagnosis options. Russell is quick to point out that her company does not diagnosis patients, but rather provides research and information that can be shared with a patient’s doctor, who makes the ultimate diagnosis.
“No patient advocate should say they diagnose patients. That’s not our job,” she emphasizes. “Our job is to get the best possible information and connect them with the right medical resources.”
In other cases, patients have been correctly diagnosed with rare diseases, but they don’t understand the condition and treatment options, says Russell. “A lot of people come to us seeking more information, but they want more than what they can find through Google; they want serious medical research.”
Russell says that as the Baby Boomers age, new insurance options emerge through the ACA, and treatment options become increasingly complex, there’s a growing need for patients to work with patient advocates. But skeptics warn patients that there currently is no certification or state licensure for patient advocates, and no actual qualifications are required. This is not uncommon for new professions that are still creating standards and a code of ethics, says Breitbart.
In January 2013, an expert committee was formed to develop a national certification for independent patient advocates, not for those working in hospitals or other organizations. The progress of the committee, which is creating task forces and working on governance issues, can be followed at advocatecredential.org.
“We recognized that we needed to create standards for advocates who are working with patients, but also [to] create a platform where patients could see that this person is certified,” says committee member Trisha Torrey, founder and director of AdvoConnection.com and The Alliance of Professional Health Advocates (APHA). “The work is really being done from the point of view of what patients need and what they need to know.”
Advocacy in action
Torrey’s website (AdvoConnection.com) is a good place to start looking for a health advocate. All you need to search the free directory is an e-mail address and ZIP code. The search will identify advocates within a 100-mile radius. With a list of advocates in hand, contact each by e-mail or phone to determine whether he or she is a good match for your specific needs.
As you would when hiring any contractor, you’ll need to interview potential matches for the job. The AdvoConnection provides a handy list of suggested interview questions. Due to privacy concerns, it may be difficult for advocates to provide you with their patients’ names, but ask them if one of their clients will contact you directly to offer a reference.
In addition, ask the advocate if he or she has professional liability or errors and omissions (E&O) insurance. This insurance will give you some recourse if the advocate fails to provide the promised services. Other questions may include: What are your hours, and how do you communicate with clients?
Advocates can find you if you are willing to post your question or issue on an online board managed by the APHA. Anonymous posts come from people around the country who are seeking help with various health issues.
The cost of an advocate will most likely come out of your own pocket. Advocates’ services are generally not covered by health insurance. There have been some examples in which flexible spending accounts were used to pay for an advocate’s services. It’s important to find out how much an advocate charges. There’s no standard fee for patient advocates, but hourly fees range from $60 to $250, depending on the complexity of the service or whether a trained health-care professional needs to help out.
Russell recommends asking for a written agreement or contract that lists the services to be provided, estimated hours, and how long the service will take. “Most advocates will put their information and answers to you in writing without hesitation,” she says. “Don’t rely on verbal promises or commitments.”
Some advocates will waive their fee for an initial consultation and assessment to learn more about your unique needs. Project- or retainer-fee arrangements are sometimes available for longer-term assignments.
In contrast to independent patient advocates, some professionals work full-time in hospitals, insurance companies, and other organizations. If you undergo knee-replacement or hip surgery, you may encounter a patient advocate at a hospital. They are often former nurses or social workers.
There are some similarities among independent and in-house advocates, the main one being their common goal of helping patients navigate through the health-care system. The biggest difference is that in-house advocates are paid by the organization, not by patients. Consequently, they have some allegiance to the organization and its policies. “They walk a funny line between their loyalty to their employer and their main concern, which is the patient,” says Breitbart.
In hospitals, advocates often deal with conflicts between patients and providers and between patients and their families. They also manage patients’ needs and complaints during the hospital stay and handle discharge planning. Some advocates specialize in certain areas such as breast cancer or heart disease. Several hospitals such as Mt. Sinai Hospital, NYU Langone Medical Center, and Weill Cornell Medical Center in the New York area have patient advocates on staff, but it’s still not commonplace nationwide.
The complexity of health care has changed enormously, Breitbart says. “The emphasis on technology [and] the limited amount of time that a doctor can spend with a patient have certainly changed over time,” she says. “All of those things have come together to really create an important need for someone being there advocating for patients.”
What to look for in a patient advocate
Eight key characteristics are considered the hallmarks of an ethical and effective patient advocate.
Experience as a health-care professional can help a patient advocate understand the nuances of the medical system, but nonclinical backgrounds can prove useful as well. Find out how much experience an advocate has in handling cases similar to yours. Keep in mind that this is a relatively new field, so very few advocates have been doing this for more than five to 10 years, but be wary of advocates who only have a few months of experience.
Some advocates may have earned certificates from universities or online training programs, but currently, no national certification or licensure by a recognized accrediting organization exists for patient advocacy. A committee of experts was formed last year to develop a certification that will be available in a few years.
Does the advocate belong to professional associations such as the National Association of Healthcare Advocacy Consultants (NAHAC) or the Alliance of Professional Health Advocates (APHA)? Membership is no guarantee of ethical behavior, but these two associations have established standards for their members. Visit www.nahac.memberlodge.com or www.aphadvocates.org to determine whether the advocate is a member in good standing of either organization.
Members of APHA and NAHAC abide by a code of ethics aimed at providing compassion and respect to patients and their families. Other ethical conduct includes being transparent, maintaining patient privacy, and avoiding discrimination.
Word of mouth is one of the best ways to find an advocate. However, if your friend hired an advocate to handle insurance claims, that person may not be the best at researching rare medical conditions. Advocates specialize in different areas, so match your specific needs to someone with a track record and relevant experience.
Does the advocate remind you of a salesperson who does all the talking but doesn’t know how to listen? Good advocates listen twice as much as they talk. Moreover, can the advocate communicate confidently about his or her experience and how he or she can help you?
Don’t be afraid to ask how many projects the advocate is working on. It’s normal for advocates to be juggling a few cases at one time, but make sure the person has time to give your needs the attention they deserve.
Unless you meet the advocate in person, it can be difficult to determine how professional he or she is, but when you deal with the person on the phone, consider whether the advocate respects your time and understands your needs.