When You Are “Protected” From Your Protected Health Information (PHI)

I recently had to obtain my medical records from the rheumatologist at Mount Sinai Hospital that I saw while I lived in New York, and the records for my two most recent appointments with my now technically “old” rheumatologist at the University of Michigan Hospital.

Recall that I had obtained all of my other previous medical records from the University of Michigan before I moved to New York, and that was total chaos to the tune of $361.26 (Read: What Happens When Your Medical Records Aren’t Yours?).

Well folks, they’ve done it again.  And by “they,” I mean the medical industrial complex, the geniuses who got the idea that patients should be charged to obtain their own protected health information.  That information is so protected that even, I, the patient, cannot have easy access to it.  That is, of course, unless I pay for it.  So I can access it, but it will cost me more time and money, over and above the cost of living with illness itself.      

This time, I legit don’t care about the money.  Between the two requests, I’m out just under $25.  It’s the principle.  I can understand that if you’ve already obtained the full version of your medical records, if you needed additional copies that there might be a charge.  But to obtain any part of your record for the first time?  It simply shouldn’t be allowed.  And if it’s going to be allowed, then these facilities need to follow their own rules and policies, which as far as I can tell, they aren’t.   

For the Michigan records, the form clearly states that I wanted to receive a call regarding the charges before the request was processed.  THAT NEVER HAPPENED.  The form also states that there will be no charge for record requests that are one (1) to 75 pages.  However, I was charged a “reproduction fee” and shipping, which cost more than the “reproduction fee”.  I think “reproduction fee” is a fancy way of saying, we’re going to get you, but by giving it a fancy name, we’re going to make it so that you can’t fight us on it. 

For the Mount Sinai records, I was charged over $10 for priority mail.  The records could have been mailed cheaper, I have no doubt about that.  But I had no choice in the matter.  They sent them how they sent them, and made sure the bill was on the top of the pile. 

I assume that the records – from a hospital in Michigan and a hospital in New York – both came from the same address in Atlanta because both hospitals use the same electronic medical record (EMR) program.  This protected health information is so protected that information from Michigan, New York, and who knows where else, ends up in Atlanta for printing, and costs me money to ship back to me.  Sounds really safe, doesn’t it?  My information is really protected when it lives in one place and is sent to another place just to copy and mail back. 

I don’t understand why these records are so valuable to the people that are charging me for them.  But they are valuable to me.  They are PRICELESS.  I need this information.  And to date, I have found no EMR system that is able to provide the level of information that the actual paper record provides.

Why should I have to pay for the record for services when I’ve already paid high costs physically and emotionally for the services that have been provided?  It’s adding insult to injury.  It’s telling me that someone is more deserving of my information than I am.    

And who’s benefiting from this?  Not me.  Not the patient.  Not the person who has to shell out money for the sake of continuity of care.  So I ask why?  Why are companies doing this?  There is no explanation other than making a profit.  Well guess what?  It’s criminal.  It’s profiting off of the pain and suffering of sick people.  And I’m literally and figuratively sick and tired of it.  I shouldn’t have to fight, or pay, to get access to my own information.  No one should.  There has to be a better way. 

I guess in reality, PHI really means protecting patients from themselves.  But I don’t want this information kept from me.  In order to be a fully engaged patient, I need to be able to access my medical record.  I fear that what actually occurs is not protection but highly unsafe and poses risks to everyone, and people will suffer even more by not having access to information, that as patients, we so desperately need.  Nothing about us, without us, right?

As far as I can tell, my information can be farmed out to companies across the country and they have an easier time getting their hands on my information than I do.  I should not be obtaining this information on an as needed, or need to know basis.  Having FREE and EASY access to my protected health information should be a right, not a privilege. 

Have you had this happen to you?  Please share your stories in the comments, and share this post with others. 

THIS NEEDS TO STOP, NOW!!!