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Navigating the healthcare system in the USA

Looking for any advice or learned lessons on navigating our healthcare system when you have something more than a minor illness. I know many of us have gone through this and would like to hear some of the things you have learned.

Any trustworthy apps to keep track of your medical records so you have it on hand for each doctor?

How to deal with the insurance company when the code given is ineligible or incurs extra cost?

How to not eat through your savings?

When to recognize a test is necessary or unnecessary?

How and when to get second opinions?

How do you research doctors you are referred to so that you get one of the best for your case?

Anything I haven’t mentioned please feel free to offer ideas.

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  • Comments (18)

    • 2

      I’ve seen mixed results by myself and others on challenging some of the fees and extra charges doctors and hospitals tack on. You won’t be able to get out of the charge for your surgery but if there is some 3rd party doctor consultation fee for a doctor you never even heard of before or they are trying to charge you $7 for a tylenol, you might be able to fight those. Just be polite, firm, and question every charge you have. Keep records of who you talked to and what is being done. You may even be able to get that $2000 surgery charge knocked down to $1300 if you claim low income or paying out of pocket. From my understanding, they will try and charge your insurance company a high price in hopes that they will accept it, and most insurance companies try and negotiate and get the price lower. I believe that doctors offices will play around in that wiggle room with you and allow you to get prices down to what medicare usually will pay for that service. It’s a shame we have to fight so hard for charges, but give it a shot. Worst they will do is say no, best they will do is lower a charge or drop it completely.

      • 2

        That is a great idea about taking notes of who you talked to, I never thought about that. Thank you.

      • 2

        I have asked for the detailed sort of breakdown that you mention here, down to the aspirin level. I can’t even get a breakdown that tells me which physicians treated me. I will try to take it to the next level.

    • 5

      On a scale of 1 to 10, my worst health problem was probably a 4. Depending on what you’re going through, that might not be enough experience to be helpful, but I’ll try anyway.

      “Any trustworthy apps to keep track of your medical records so you have it on hand for each doctor?”

      I agree that something like this should exist – I haven’t found it.

      The Quest app is good for blood tests. But mostly I keep medical records on paper in file folders. MRI results were on a CD, and I dropped the CD into the same folder to keep with everything else. Separate folder for each combination of medical condition and year.

      “How to deal with the insurance company when the code given is ineligible or incurs extra cost? How to not eat through your savings?”

      For drugs, if the insurance company won’t cover it you might be able to get a substantial discount elsewhere. The most common place is GoodRx, which lets you pay a lower price for many prescriptions. For very expensive medications, escpecially newer medications, the manufacturer might have a discount program that you can sign up for.

      If the insurance company is denying based on medical necessity, call them and ask to speak with their clinical review team about the specific criteria. You might find that some of those criteria are negotiable. If the medication has two relevant specialties, you might earn some points on medical necessity by getting relevant diagnoses from two different specialists.

      “When to recognize a test is necessary or unnecessary?”

      I err on the side of taking all the tests that my doctor recommends. There have been a few times that I felt afterwards the test was a waste of money/time, but I don’t have any idea how to know that in advance.

      “How do you research doctors you are referred to so that you get one of the best for your case? How and when to get second opinions?”

      These are basically the same question. You only need a second opinion if you don’t trust your doctor. And if you don’t trust your doctor, you need to find a better doctor.

      I start with medical review sites like healthgrades and focus on the specific specialty that I need. (I rarely use general practitioners.) I start with highly rated doctors, and also read patient reviews. Patient reviews should show that the doctor actually helps people, not just makes them feel better. Also watch out for reviews that indicate mistakes or lack of attention.

      After choosing a doctor that way, there’s still no guarantee I’ll be satisfied after meeting with them. My expectation is that I will explain my concerns and relevant observations, the doctor will listen and understand, the doctor will immediately have an idea about a possible diagnosis and will order a test to confirm, and the doctor will explain what the problem is and how he/she knows that and what can be done about it. If the doctor doesn’t meet any of these expectations, I will look for a new doctor. Whether I continue to see this doctor until I find a replacement depends on the urgency of my condition and how far they are from meeting my expectations. If they have explained my condition and options well, I will be able to look up this condition online, confirm their diagnosis, and learn more about how I can help myself.

      • 4

        Followup on related topics you didn’t ask about…

        For any medication, read about the side effects. You need to watch out for those side effects and be ready to stop taking the medication or deal with those side effects.

        If you have side effects or are disappointed in treatment results, don’t wait for your next appointment to bring that up with your doctor. Call the same day and at least inform the office staff. They may have a quick solution for you, but they won’t know you need help unless you say so.

        Think about how much effort you are willing to put into this medical condition. Are you willing to change your diet? Are you willing to take daily injections? Are you willing to commit time every day to therapy? If so, the doctor needs to know that. They will only give you advice that they think you are willing to follow through on, and they mostly assume you are like most of their patients. If you let them know that you’re all in, you will get different advice.

        I have sometimes self-diagnosed and then followup testing failed to confirm my diagnosis… This happened to me twice with two separate conditions. I was correct but these tests aren’t perfect. I regret backing down and delaying help for years because of a bad test. In hindsight, I knew I was right and I should have insisted on retaking the test.

      • 3

        This is a lot of great advice, I’m taking notes! I appreciate you putting effort in and responding.

        That is crazy about self-diagnosis with TWO failed tests! I haven’t had that exactly, but I am learning the value of trusting your gut and not backing down.

      • 2

        It’s similar to the “works on my computer” issue that we have in software development.

        Some conditions are diagnosed by deliberately putting your body under stress and measuring signs of that stress.

        Situation one: They put my body under stress that they know I could handle if I didn’t have the condition. I have the condition, so I feel terrible. Trying to drive home afterwards, I found myself suddenly losing capacity, and was barely able to pull over and avoid losing control of the car. A week later I get a call from my doctor who says that the test didn’t find any problem. I never got a good explanation for that. I got an official diagnosis for that condition years later.

        Situation two: Condition was intermittent and the test just happened to be one of my good days. The whole testing process was so difficult for me that I was reluctant to repeat it. I got an official diagnosis for that condition years later.

        Yes, dealing with the medical system can be very frustrating. And the sicker we are, the more help we need, the more difficult it can be to jump through those hoops and get the help.

    • 5

      These are great questions that do apply to being prepared. If you take various steps beforehand, you get through this process much more easily and without any surprise charges.

      Any trustworthy apps to keep track of your medical records so you have it on hand for each doctor?

      Most doctors now have online portals that you will sign up for to view your records, test results, set appointments, and do secure communication with your doctor. I recommend downloading all your records after an appointment and adding them to your Medical folder on your bug out bag flash drive and on your computer.

      How to deal with the insurance company when the code given is ineligible or incurs extra cost?

      If possible, have your doctor give you a copy of all the codes that they will try and bill insurance for and run that by your insurance company before the procedure. Get a pre-approval letter/email, don’t just take the rep’s word for it on the phone. Documentation is key, like Magic 8 Ball mentioned here. This will save you any unexpected or uncovered charges after the procedure. If your insurance then comes back and says that they won’t cover a certain code, go back to your doctor and tell them they won’t accept the code and ask if there is anything they can do about it. My experience is that they then give you another code that then is accepted.

      How to not eat through your savings?

      Getting pre-approval before can help avoid not having things covered. Shop around. Yes, shop around. Hospitals charge different amounts for procedures and one may not cover it but another might.

      When to recognize a test is necessary or unnecessary?

      Have your doctor explain each test and why they recommend it. If it doesn’t make sense or something feels off you can deny it or get a second opinion.

      How and when to get second opinions?

      Be polite and say something like “Thank you for your recommendations. I don’t want to sound disrespectful and I do trust your opinion, but it would make me feel more comfortable to have a second set of eyes on this health concern I have. Do you have any recommendations on specialists who could give me a second opinion?”

      Or if you don’t feel comfortable saying that, just leave and say that you have to think things over. Then just search another doctor in that field and set up an appointment with them, act like you are brand new to the situation, and see if they come to the same conclusion. Check with your insurance before you go to this second doctor though, they might deny the second one because they saw you went to a doctor already for the same issue. Again, ask for pre-approval for a second opinion.

      How do you research doctors you are referred to so that you get one of the best for your case?

      I don’t have any good advice on how to research a good doctor. I can say though to not go solely by Google star reviews. I’ve had a doctor who had horrible bedside manners. He took less than 4 minutes for my entire wellness exam, didn’t make eye contact with me once, lied that a procedure wouldn’t be covered, and wanted to do all this drug testing on me to refill some low risk pain medicine that he originally prescribed to me. But on Google he has like 4.6/5 stars or something.

      Anything I haven’t mentioned please feel free to offer ideas.

      Keep a note on your phone with any and all medical questions and issues that you develop throughout your normal life. Then when it’s time for your annual checkup or whatever, you have a list made up of things to talk to your doctor about. I like to print up a page of things I want to talk to the doctor about and then hand it to them. They quickly look it over and go over the list and make sure you don’t miss anything. They then can keep that paper and it makes it easier for them to write up their notes at the end of the appointment of the things you talked about.

      If you are asking all these questions for a health concern you have, I’d suggest involving a close friend, parent, or spouse to help you through this process. I say that because life altering conditions like being diagnosed with cancer or many others can be extremely stressful and then having to deal with the medical mess doesn’t help the stress and you often aren’t thinking clearly. A third party person might be in a better mindset to help you research doctors or fight with insurance companies and leave you to rest and recover.

      • 4

        Always, always ask for a detailed itemized bill from the doctor, hospital, surgeon, etc. Case in point:

        My son fell off his bike and broke his arm. After the doctor said it needed to be casted, the nurses brought in several velcro casts and Ace bandages. They opened them, but never even attempted to use them. The doctor did in fact apply a cast and we were sent home. Before we left, I took a picture of my son with casted arm and all the things the nurses left on the gurney in the ER room. When we got an itemized bill (after several requests) all of the bandages and velcro casts were listed, at exorbitant charges for each, of course. I took the picture to the Administrator with a copy of the bill and explained the issue. A simple question in this case: How many casts did my son need for one arm, and why was none of it used? The Admin’ modified the bill on the spot.

        We learned long ago to request itemized bills, after a dentist tried to charge me $800.00 for a gold cap that I obviously didn’t have in my mouth. The itemized bill showed it and I fought it successfully. I wouldn’t have been able to do either without the details.

    • 1

      Have you used MyChart?

    • 3

      How to keep records? 

      I agree with the online portals. You can get copies of everything. Also, agree with others to print and put in a file and then store digitally.

      How to deal with the insurance company? Agree with others on prior approval. Make a call the day before expensive tests and ask if you are unsure. If the code is not correct or not funded, contact DR office for resolution and then the insurance company. If nothing can be done there look up the code on google and do some research, you might be able to have a more informed discussion with a little more knowledge. We call them CPT codes. So google CPT code and then the number and it will bring up a list. Compare to your procedure and diagnosis. Also, in the pre-approval stage, if you are denied, have your DR do a person to person review with your DR. Specifically request this from your DR. AND on DR told me the squeaky wheel gets the grease. If you have the time and energy, call them daily….speak to the same person, if no help there, ask for the supervisor.

      How to not eat savings?? 

      It is always cheaper to go with IN-NETWORK Doctor. That being said, that is not always the best choice as you might get better care elsewhere. So that is a cost/benefit decision. Also, many healthcare institutions moving toward providing an estimate of cost when requested by patient. Ask for those up front. RX express definitely helpful for drug costs. Print out the coupon and take it to the pharmacy. If your insurance supports mail order drugs for 90 days, do it!!! Always cheaper than 30 day from retail pharmacy. Can’t do schedule 2 or narcotics this way, but most others can be done like that. Get the itemized bill on everything and compare to your treatment. Anything you don’t recognize, dispute it.

      Is a test necessary?

      Ask the long list of questions…Why are we doing this test? What are you looking for, specifically? How will this test change my care? What will this CT scan show that the ultrasound didn’t show?? Is there a less invasive/expensive way to get this information? Also, if we find X what will we do versus if we find Y?? ( which goes to the question of how this test impacts your care) Clafify any previous tests that were the same. I just had these X-rays at my DR office. Can I just sign a consent and have the info sent here?? Or do you need new X-rays? What will these new X-rays show that the older ones did not? If in the hospital, what is the plan of care today? What tests are we doing? Am I seeing any new specialists and why am I seeing them? And good advice to have a support person taking notes. I am younger and in healthcare, but even I know I’m not at my best when I’m sick or distressed. Best to have two ears listening. Clarify details with nursing staff if you forget or have questions. Ask to speak to the doctor if you have new questions. Write down questions to ask when your DR comes in or when going to the office so you don’t forget them.

      Get a second opinion any time you feel uncomfortable for any reason. 

      As for who to see? Other than online and how you feel when you actually see the DR, ask a trusted healthcare professional (your primary), nurses, other friends in the area who they have used and what they think of the person. Are they competent? What is their bedside manner? Do they address concerns right away? Explain things in a way you can understand? Do you know anyone that had bad outcomes or situations with the healthcare provider. Also, I generally like nurse practitioners, they take more time with you. Listen better. Explain better. But that is just an opinion, and sometimes the special nature of the illness requires a DR anyway. Just some food for thought on that one.

      • 1

        In the person to person review it should say a review with your DR and the insurance company. That is how the review takes place. 

    • 3

      I haven’t had a chance to read ALL of the responses below, so apologies if I am repeating.

      One thing I will recommend is checking out your physician with your state medical board. Every state has one, and has records of physicians that have been disciplined. Most have online systems where you can check the doctor’s license and disciplinary history online. Some doctors are disciplined for administrative “offenses”, like failing to take enough continuing ed courses, so always read the full record. Having a disciplinary record doesn’t automatically mean they’re awful. 

      State medical boards are also a great “first stop” if you are worried that you were given inappropriate treatment.  You can report a concern, and then a team of experts will review the case and advise whether the physician in question did or did not follow recommended medical practice. It doesn’t have to be scary or punitive; it is just a good balance in a system of checks and balances to help protect patients. It is surprising how few people know about this. (Similar entities exist in every state for pharmacists and nurses)

    • 5

      If you have a complex, ongoing medical problem you absolutely want to ask for a Nurse Case Manager. They help coordinate patient care and are particularly useful for complex diagnosis where a patient might be in need of care from multiple providers / clinics. (Disclosure I am a nurse)

      For example a breast cancer patient might need the services of a surgeon, oncologist, physical therapist, councilor, and alternative practitioner. A nurse case manager makes sure all that is happening while coordinating with insurance companies. 

      As far as insurance companies go, be familiar with your benefits. If you can, call before you use any services (ie can you go to any urgent care or will the insurance only cover a specific one). When you speak to any insurance agent take notes – get their name, the date and time you spoke with them. Write down a summary of the conversation. If they deny a claim you can appeal and it helps to have your records as part of the process. 

    • 5

      EzlyAmuzzed, this is a quick note to say I’m sorry you’re having to deal with this situation.

    • 3

      I check in on The Prepared’s Reddit page every now and then and saw a comment about this topic that I think might help you.

      A guy recommended this book and it looked like a good resource. 

      My library has hard cover copies, ebook, and audiobook available. Aren’t libraries great? I think I’ll make a forum post about them because they really have helped me out a lot and people might think they are just a place to check out old books.

      And then I found another book that is under the same topic of navigating the health system.

    • 4

      Not really doctor information, but I worked as a pharmacy tech for a minute and learned a lot of name brand drugs have coupons to use on their websites. I really prided myself on finding deals for my customers! Anyway, different drugs have different things you need to do – some you just get a coupon code that the pharmacy can use, others you’ll need to register. Unfortunately, it seems most will not work if you’re uninsured or on government insurance, ie/medicare or medicaid. I also had a customer who retired from the fed gov’t and still had insurance through work and it wouldn’t work. But it’s always worth a shot! Also, you may be able to talk to the pharmacist about alternatives. I can’t remember the drug names, but there was an eardrop that was being prescribed for children that had a copay over $300 for some. It was really just two drugs that were cheap. the pharmacist had the doctor’s office re-write the prescription so they got two eardrops costing $16. After working at a pharmacy I truly believe your pharmacist is an untapped wealth of knowledge! 

      • 1

        That is a great tip that I am writing down on my grocery list so next time I add some medication onto there I’ll see it. That is super kind of you helping customers find deals.