What $365 for medical recordsIn anticipation of moving, over the summer, I requested my medical records.

I felt that it was important to have this full set of documents on my person, especially to make sure that my transfer of care went as smoothly as possible.

When I requested my medical records, I received 1,200 pages and a bill for $365.  I freaked out, of course.  That is a lot of money…for paper.

The reality is that the form I filled out clearly said that if the cost was going to be beyond $50, I would be informed ahead of time.  This never happened.  I also went through all 1,200 pages, once I got them, and upwards of 300 were blank, had only the hospital logo on them, or had one line regarding the unsecured nature of electronic information.  There were also 50 pages charged at a higher rate that I could not find.

To be clear, if I am going to pay for my medical records – about my own, personal health – I am not going to pay for superfluous pages, which also increased the tax and shipping I was charged.

I first contacted the hospital.  And they told me that I had to contact the company in Atlanta that was responsible for copying them.  When I contacted Atlanta, they told me that they had to contact Michigan.  Five days went by after that and I didn’t hear anything.  I was totally getting the run around, so I opted to contact the Better Business Bureau.  Within three days, I was told that I should have been contacted prior to processing and wasn’t, so they were only requiring that I pay $50.

This satisfied me.  Had I been told ahead of time what the cost was going to be, like I was supposed to have been, I would have had to find some other way to get my health information.  Because I wasn’t going to pay, nor could I afford, $365 for paper.

Not only is that ridiculous, this is my personal health information that they are basically holding hostage.  As if being 28 years old and having a 900-page medical record doesn’t complicate my life enough, they are going to charge me like highway robbers to get my hands on that information.

Shouldn’t that information be free for the patient?  Or shouldn’t it be at a low enough cost that anyone who wants to obtain their medical records can?  Let’s be honest, healthy people, that have a “normal” sized medical record, don’t need that information.  Or if they do, it’s so minimal that they can easily pay for it.

And to be clear, I never imagined that five years of medical care had resulted in almost 1,000 pages of records and other information.  I truly didn’t.  But I knew the importance of having the information in case I needed it.

Clearly, this amount of paper is really not useful to anyone.  I have the records in a file box, but if I walked into a doctor’s office with it, they would look at me like I’m crazy.

So I decided to see about how much it would be to get an electronic version.

Interestingly, when I went to put in a request for the electronic version, I noticed that the form had changed and that the particular box I referenced about prior contact before charging was no longer on the form.

Shockingly, I was told that the e-version is charged per page, just like the hardcopy.  So if I wanted an e-version, I would actually owe $365 for that.  Even though I already paid $50, and they had tried to charge me $365.

The nightmare continues.

How can this be allowed?  This is just one part of the medical system that I absolutely do not understand and cannot comprehend.  Medical care, no matter how you swing it, especially if you are chronically ill, is not cheap or simple.  So in that way, I shouldn’t be all that surprised that trying to obtain my medical records was such an ordeal.

But how can you be an informed, engaged, knowledgeable, savvy patient, when you don’t even know what’s in your own medical record or how to gain access to it because you cannot afford it?

In theory, truly electronic medical records and patient portals should facilitate getting medical records more easily.  However, my experience with patient portals is that 1) they only show information from when you signed up and gained access to the portal and 2) they are not nearly as complete as the record that the doctor can see, which you can get in paper form if you are willing to pay for it.

And until there is one online, universal system, which, in theory, every doctor in the entire country could access – at this point every major hospital having access would satisfy me – patients are still going to need to have a complete set of their records for themselves and for their doctors.

If I had access to an industrial copy machine, I suppose I could try and scan my entire record myself, but would a PDF with that many pages even fit on a flash drive?  This is a serious problem for people that are chronically ill, especially if you move or have some other life event that causes you to change care providers, unless they are somehow in the same system.

Because it seems to me that even though it turns out that my old doctors and my new ones use the same online chart system, it is specific and unique to each hospital, and they can only gain access to the records from their own system, even if the system they use is the same.

I wrote about some parts of this situation on my own blog, but I am writing about it again here because I don’t want other patients to be caught unaware about the risk you take in requesting your medical records when you have a complicated medical history.  If there is some sort of fee schedule provided, it is not transparent.  And I would have ended up in the same situation when requesting the e-record link if I hadn’t specifically put a note in with my request, telling them to call me before processing the request.

The woman I talked to told me that I could give her a dollar amount I didn’t want to go over.  But she told me that it would be page-for-page the same as the hardcopy.  So then what?  If I was willing to pay $100, I would end up with about a fourth of my medical record?  What kind of sense does that make?

All I can say is that something in the system has to change.  And soon.  We might be expanding care for all, but the reality is that there are hiccups in the system that are really putting patients at risk.

If you are interested in more discussion of the pros and cons of electronic medical records, I have a post about that on my personal blog.