A good friend of mine was the recipient of a lung transplant 10 years ago. Since average life expectancy after a lung transplant is five years, he's in and out of the hospital all the time, and in pretty rough shape. But if it weren't for the dedication of his wife, a pharmacist, he'd be even worse for wear. An assertive person to begin with, she uses her tenacity and know-how to get her husband access to the best doctors and medical care. She isn't paid, and it's informal, but she is doing patient advocacy.
Elisabeth Schuler Russel has been a patient advocate since navigating her 2-year-old daughter's journey through an inoperable brainstem tumor.
In general, patient advocates are not well known. Many people do not know who they are or what they do. But in many instances, they can save money, time, headaches, and even lives.
Anyone can become a patient advocate, but because the work requires a keen understanding of health care, they tend to have worked in some aspect of the health care industry. Advocates include patient representatives, educators, care managers, and even public health activists. Some specialize in certain areas, such as mental health or pediatric care. A good one will be able to provide a full resume detailing relevant history and how it might pertain to your own needs. Think of their work as being to your health what a personal financial advisor is to your wallet.
One of the more common and useful ways this professional advocates for you is by simply paying close attention so that you don't have to--or in case you can't. For instance, when a patient receives grave news, such as cancer diagnosis, the simple act of listening closely can be nearly impossible. I've seen perfectly competent patients nod and say "yes" for five minutes, but then be unable to repeat anything I've just explained.
Patient advocates can also be very useful when it comes to such banalities as scheduling and billing. An unfortunately common example is when a hospital bills both the insurer and the patient, is paid twice, and then sits on the balance. Credit balance recovery is another example of what your patient advocate should be able to do for you. They can assure that you don't pay twice in the first place or help get your money back if you do.
The main deterrent to using a patient advocate is that, unless you have one in your family or close circle of friends, they are not cheap. They typically range from $50 to $200 an hour, according to the National Association of Health Advocacy Consultants. On the other hand, they can be very cost effective, especially if dealing with bills. The Wall Street Journal reports that most cases cost the consumer between $300 and $400 and last a few weeks or months, but can save far more. And of course, if an advocate helps extend your life, a case could certainly be made that the advocate is, ultimately, priceless.
Finding and vetting patient advocates can be a laborious process. We at First Stop Health believe it shouldn't be, and have made the process far more user-friendly; simply click on this link if you'd like help finding one.
Mark L. Friedman MD FACEP FACP is an emergency physician working to revolutionize the delivery of health care.