Be Your Own Patient Advocate: Healthcare Systems Can Be Faulty

I have a lot of health problems and each condition is managed by a different specialist, and I also have a general practitioner who is my primary doctor. Until about a year ago, I naively assumed my primary doctor was overseeing the care being dispensed by my other doctors and that he was being kept in the loop by my other doctors. I discovered this is not the case and that my specialists are either too busy to communicate with my primary doctor, or my primary doctor is too busy to always review notes or test results that are sent to him. After making this startling discovery, I made the decision to become my own patient advocate.

While people should respect and trust their doctors, they should also be aware of the shortcomings and flaws inherent in every human. Just because someone has MD tacked on to the end of their name does not make them immune to mistakes. If patients are not involved in every aspect of their healthcare then they are making themselves vulnerable to potentially life threatening oversights, overcharges by billing staff, underpayment from insurance companies, and unnecessary costs from duplicate tests. Being your own patient advocate can be of benefit to you and the medical team(s) treating you.

Here are some examples of several scenarios that alerted me to the necessity of being your own patient advocate.

Example: My uncle went to his primary care doctor complaining of severe headaches. The doctor wanted him to have an MRI done of his spine and brain. My uncle also has degenerative arthritis of the spine and his rheumatologist had recently done a complete series of x-rays, CT scans, and an MRI. My uncle told his primary doctor he had recently had a lot of similar tests ran and wasn't quite sure why the tests needed to be repeated. Sure enough, the primary care doctor took the time to flip through his chart and found the test results and agreed there was no need to repeat the tests. Had my uncle not spoken up he would have had to pay for unnecessary tests.

Example: I recently began having severe migraine headaches and went to see a neurologist as a new patient. He prescribed Darvon for the pain. Had he taken the time to read my new patient intake information, he would have seen that I am already taking Ambien, Ativan, Soma, and Cymbalta for other health problems. Since I am my own patient advocate, I make it a point to research each medication I am on and to know their side affects and drug interactions. So I pointed out to the new doctor that I do not think Darvon, Soma, Ativan, Ambien, and Cymbalta would mix well. He agreed and prescribed a drug in an entirely different class, but had I not spoken up he would have let me walk out with a dangerous mix of drugs.

Example: I review every EOB (explanation of benefits) statement that comes from my insurance company. These statements show the date of service, dollar amount paid, and to whom it was paid to. I then cross reference that information to my bills and payments. On multiple occasions I discovered that I paid the doctor/hospital/lab my portion of the cost and that my insurance also paid them. Whenever I find discrepancies I always call the billing department of whoever was overpaid and alert them and ask them to either send my money back or credit my account if I know I will be seeing that doctor again. Odds are that someday down the road someone would catch the error, but I do not have time or money to wait on an audit for someone to catch the mistake and send me my money back.

Example: My insurance company refused to pay for a procedure because they said it was experimental and was done at an out-of-network facility. I had to file an appeal and get my treating physician involved stating why the procedure was medically necessary. Then I had to clarify that since the doctor who ordered the procedure was in-network and there were no in-network facilities capable of performing the particular procedure I had done, I had no choice but to use an out-of-network facility. My insurance ended up paying the bill but had I not known how to fight the system and file an appeal, I would have been forced to pay thousands of dollars out of pocket.

I do not think my examples are out of the ordinary and believe they happen daily to people who are simply unaware of their vulnerability or who are possibly uneducated on how to fight back when necessary.

So just how does someone become their own patient advocate? It's not easy and sometimes you have to ask for other family members help if you are too ill to stay on top of things. But once you have your basic plans in place and get into the habit of implementing a few simple preventative and proactive steps, it gets easier. Here are the things I've personally done and have found that my doctors have been very receptive, supportive, and appreciative of my efforts to be my own patient advocate.

Know Your Medications
Know your own body and the way you react to certain drugs and drugs in the same "family". Do not be afraid to question your doctor when he prescribes a medication you do not think is appropriate for you. Explain to your doctor that you aren't trying to be difficult or uncooperative but that you are involved in your own well being. You need to know both the brand name and the generic name of each drug you are taking. You can find this information easily on the internet or in a reference book such as a Physicians Desk Reference (PDR). Each time a new drug is prescribed to you, remind your doctor of all the medications you are taking and ask if there are any contraindications, side affects, or adverse reactions. Also get your pharmacist involved and utilize their knowledge. Be sure you understand the proper dosing and things to avoid with certain medications such as other drugs, sunlight, alcohol, or certain food.

Keep Records
Every time you have a test ran, get a copy for your own records. If you change doctors get a copy of your entire medical chart. If you are ever in the hospital keep a log of who did what, when they did it, where it was done, how it was done, and why it was done. Again, ask for a copy of any lab results or test results. Also, save all receipts and statements from doctors (billing slips), insurance companies (EOBs), and pharmacy receipts and printouts. You will be glad you have this information in the case of malpractice or mistreatment, or if there are questions from your insurance company. The billing slips from the doctor contain the diagnosis codes (ICD-9) and the codes for the procedures performed (CPT-4). The procedure code must match the diagnosis code in order for your insurance company to pay the bill.

Educate Yourself on All Ailments or Diseases You Have
You should research every disease or disorder you have and learn as much about each condition as you can. You can get information from your doctor, pharmacist, medical books, educational pamphlets, or the internet (one thing to note: when doing research on the internet it always pays to be skeptical of information until it can be verified by a professional or trusted source). The more you know about your condition(s), and the better you understand medical terminology, the easier it will be to understand things your doctor tells you about treatment plans, risks, long term planning, etc. Plus, you can't expect your doctor to stay on top of the latest greatest research or technology on every single disease. So do not be afraid to ask your doctor about a new drug or procedure you've read about. Also, do not hesitate to ask why one drug is better than another, or one surgical procedure is better than another, and do not be afraid to get a second opinion if you do not feel your current doctor is giving you the best care possible.

Understand Your Medical Insurance Benefits
You should know and understand all aspects of your medical insurance. Know what your coverage amounts and limits are, individual and family deductibles, co-pay amounts are for doctor visits, lab tests, specialists, medications, and hospital stays, and the difference between in-network and out-of-network coverage. If you don't know or understand these things, do not hesitate to call your insurance company and ask questions. Do not stop asking until your questions are resolved to your satisfaction. If the first line representative can't answer your questions or resolve your issue, ask for a supervisor. Document all conversations you have with your insurance company - write down the date each time you speak to them, who you spoke to, what you spoke about, and what the outcome was. Also ask for a reference number or some type of ID code in case you have to call back. If you send anything to your insurance company in writing be sure to make a copy for yourself.

Summary:
Being actively involved in your own healthcare could save your life, save you money, save time, and reduce stress. You need to trust and respect your doctor but at the end of the day it's up to you to make sure you are getting the best care possible - do not be afraid to fire your doctor and hire a new one if that's what it takes. It's a lot of work being your own patient advocate but the payoffs definitely outweigh the time spent.