How often have you called an insurance provider or hospital billing department to hear “Please hold for the next available patient advocate”? You, savvy reader, know instinctively that the “patient advocate” to whom you will be connected will neither be patient nor an advocate for you. But there are actual Patient Advocates out there, appropriately educated and experienced, who will patiently listen to you and advocate on your behalf, whether it’s to resolve a billing issue, make sense of confusing medical information, help you find a specialist, or assist you with your health care. There are also Patient Navigators and Patient Representatives who can assist you with these things, but it can be pretty confusing to know who does what, when, and where!
In fact, there aren’t universally accepted titles or well-defined parameters for the scope of activities a patient navigator, advocate, or representative may perform, so what I will describe is what I have found to be most common. There is no national licensing board as there is for many other health-related professions (such as social work, physician assistant, nursing, et al), which places the burden on you to review an individual’s training, experience, and credentials before working with one.
What: Patient Navigators help guide patients with cancer or other serious diseases through a healthcare system along a prescribed path. Patient Navigators are often on staff at cancer treatment centers, assisting patients through their treatment course. They help coordinate care, help overcome barriers to accessing care, provide information about the healthcare center, explain things in plain language, and assist you with your needs. A Patient Navigator can be a reassuring and empowering guide as you go through treatment. At many facilities, this role is filled by a nurse, social worker, or another individual with advanced training and experience – but always ask about the Navigator’s background so you have a clear understanding.
When to use: If you have a serious or chronic illness.
How to Access: At the healthcare institution where you are being treated, or through a national disease-specific organization (such as The National MS Society).
Who Pays?: These services are almost always provided without charge to the patient or family.
Pros: Knowledgeable and helpful guidance through an illness or course of treatment at no cost.
Cons: Patient Navigators do not work for you, but rather for the institution or organization. They guide you through treatments and help you access resources within or affiliated with the institution or organization for which they work, rather than the full array of options that may be available to you outside of these entities.
What: A Patient Advocate (aka Health or Healthcare Advocate) works for YOU. Similar to Patient Navigators, Patient/Healthcare Advocates can assist you with a narrow issue (such as handling an insurance problem) as well as much broader health concerns, providing a holistic and multi-faceted approach toward healthcare (including serious illness and end of life care). Working directly with patients and families, the Advocate not only helps you navigate your care across various and often unrelated settings (your different physicians, the hospital, outpatient care settings) but connects you with resources from multiple agencies, institutions, and other organizations. Advocates can be fierce defenders of your wishes and self-determination, and help you reclaim the direction of your healthcare and treatment from an increasingly impersonal medical establishment. Advocates can help with research, finding specialists, managing insurance issues, understanding your diagnosis and treatment options, finding financial assistance, and finding and coordinating support. Many Advocates will help you prepare questions for your doctor appointments and accompany you to those appointments, take notes, and help clarify information.
When to use: Anytime you need healthcare assistance, are feeling overwhelmed by a healthcare concern, but especially when facing a serious or complex illness. Always review an Advocate’s training, qualifications, and experience before hiring.
How to Access: Ask around for personal referrals. There are several national directories available to help you find an independent Patient or Healthcare Advocate:
Similar to concierge medical practices, there are also concierge health advisory/advocacy organizations, offering premium access and services to clients for a high fee. Many geriatric care managers also act as health advocates for their clients and may be found through the Aging Life Care Association’s directory.
Who Pays?: You do. Fees will vary based on location and credentials, so always ask lots of questions about training, background, education. Always ask about how many cases like yours the Advocate has handled. Check their references and get a written contract detailing the scope of services as well as a timeframe for those services.
Pros: Patient/Healthcare Advocates work for you and are obligated to put your needs and concerns first, rather than the needs of the institution, physician, or other healthcare organization. A Patient/Healthcare Advocate gets to know you: your values, goals, personal situation, fears, and hopes, so they can help ensure your healthcare decisions are the right ones for you. A good Advocate will be knowledgeable about a vast array of resources and supports for you to consider and should provide a patient-centered (as in you centered) approach to your care.
Cons: It can be challenging to find an Advocate who is well qualified and experienced, as the field is not as well established as more traditional disciplines such as social work, nursing, and case management. Look for someone with graduate-level training in Health Advocacy or a healthcare-related field (such as social work, medicine, nursing, health law, physical therapy, geriatric care management, et al) and has a demonstrated track record. Advocacy services are not covered by insurance, so you will cover all costs, but a good Advocate can help you access the best care available, and help you avoid unnecessary costs, anxiety, and medical treatments that are not supportive of your goals and values.
What: Patient Representatives (aka Patient Relations, Patient Experience Representative) are now found at most large hospitals. They advocate on behalf of hospitalized patients and their families within the hospital setting. In many institutions, they can be found in the Patient Relations or Patient Experience Department. Patient Representatives can help you and your family communicate with your healthcare teams, resolve conflicts and make sure that any concerns you have about your care are addressed appropriately. They can also help you complete an advance directive for healthcare, an important document for your hospital stay (everybody over the age of 18 should have an advance directive for healthcare). The Patient Representative is your “insider” ally in the hospital.
When to use: When you have any unmet needs, concerns, or conflicts in the hospital.
How to Access: Often known as the Patient Relations or Patient Experience Department, their phone number is usually provided to you upon admission. I suggest you look up the information about your hospital’s Patient Representative program in advance of your hospital stay and write it down in your health notebook so that it is easily accessible when needed.
Who Pays?: There is no charge for this service.
Pros: Patient Representatives can significantly improve your hospital experience. They understand how the hospital system functions (in formal and informal ways) and have relationships throughout the institution. When I had poorly controlled post-surgical pain and my surgical team was not responsive, the Patient Representative had a pain specialist in my room within an hour after I contacted her. Patient Representatives work hard to resolve conflicts and concerns to everyone’s satisfaction, not just push back at you or provide lip service on behalf of the hospital.
Cons: Patient Representatives work for the hospital or institution, not you, and their purview is your hospital experience, rather than the entirety of your illness experience.
As you can see, Patient Navigators, Advocates, and Representatives can all play an important and often necessary role in your care – sometimes simultaneously. A Powerhouse Patient knows to take advantage of all resources available to them to get the care they need.