Be Your Own Advocate: Patient Records

Why having a copy of your medical records is important-- a must-read for the newly diagnosed

I was reading through my medical records from my first rheumatologist (who I found to be a complete idiot). He would ask me questions, but not let me adequately answer them without cutting me off, ignored many of my symptoms, made jokes about abuse when I came to the office by myself rather than with a parent (not funny to someone who has actually experienced said abuse, but thanks, doc.), etc. Needless to say, it was not a pleasant experience and I did not go back to that physician.  I did, however, request a copy of all labs/paperwork/physician notes for my own personal file and to send to Florida State for my medical withdrawal. In the process of reading these notes, I saw noted that I was sexually active. True. Sexually active “with a male for approximately two years now.” Wrong. Being sexually active does not mean one is heterosexual. Assumptions lead to consequences. This fact is not necessarily relevant to my specific condition, but what if it had been? What if it had been a different assumption and my doctor missed something because he did not take the time to listen or ask?

Better still was his note about how I was on a daily regimen of methotrexate. What? I was never prescribed that medication prior to that date. It was deemed too risky to start considering the results of my liver function tests. Was that in my file? No. The false note about my sexuality? Not relevant to my health, really, but was personally insulting. A false note about a serious medication with serious side effects? Absolutely relevant to my health and has since confused physicians who have needed my records and his notes.

So what are the lessons to be learned from this?

1. Request lab workups and all medical records from each of your physicians. This includes their notes. Feel free to make up an excuse for why you need them, or simply say you want to personally keep track of your records. There is nothing wrong with being involved and having copies. In fact, it is vital that you do.
   
   
2. Read the doctor's notes. I cannot stress this enough. Read them, review them, and if another physician requests them and the notes contain a medical error like mine did, make a note of this using either a high lighter or post it note and bring it to your doctor. Correcting errors will save your future doctors both time and confusion. It is not a bad idea to lightly point out to the physician who made the error that perhaps they made a silly medication typo in your file, and you want to let them know in case it could be important. If your physician isn't receptive or is personally offended, perhaps that is a sign you should find another doctor...
   
   
3. At 18, you are legally considered an adult. Meaning that unless you give specific permission, your doctor's office should not hand over your records or information to anyone, including your parents. If you are weary of your parents obtaining your medical files, double check with the office that they cannot be handed out.
   
   
4. Filing for disability. Should you file for social security disability benefits or have to deal with your insurance company, those medical records will be crucial to have (and know what's in them!). Read over them thoroughly and address any concerns you have before you submit them to whomever you have to for any disability claims. Do not be afraid to ask questions or address concerns with your physician. You are your own advocate before anyone else, but your physician should be your partner, not your opponent. If they are not willing to help you or speak with you about the matter, I seriously suggest finding a doctor that wants to be a team player.
   
5. Know your rights. The Health Insurance Portability and Accountability Act (HIPAA) details your rights to medical records and privacy standards. The HIPAA is long, so I am not going to post it, but it can be found here.
   
   
6. Before you pay, ask. Offices will often charge you a fee to obtain medical record copies. If you are asking for them for personal reasons, I absolutely suggest paying. They are invaluable to have. If you are requesting them to send to another physician, ask the office if they will send them directly to the other physician as a courtesy before you shell out some cash.
   
7. Organize. Organizing your records into a binder or folder and bringing it with you to appointments might sound strange, but it may help you big time. I've actually noticed most of the people in the waiting room at my rheumatologist's office all have huge binders with them (including interesting elderly women who have bedazzled their binders...). Don't feel silly, feel prepared. Your doctor will thank you.
   
   
8. Can my doctor refuse? Yes, if your physician believes that by giving out the records it puts you or another individual at risk, they can refuse to hand them over. However, if that is not an issue, they are required by law to give you your records. If you cannot get them through their office staff, your best bet is to contact the department of your state that works with HIPAA, or quite frankly, print a copy of HIPAA and take it right down to that office. If you're dealing with a hospital, go directly to their medical records department.