A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, April 4, 2013

Whos records are they?

Many people don't realize that they can inspect (and in some cases copy) their own medical records.  Providers are required to provide access for inspection free of charge, but can charge to make copies.  If there is an error in the record, you are also able to correct such error and the provider is required to accept such a correction.

This is especially important when you have someone with a complicated medical history.

On our first trip to Boston in Nov 2010, the neurologist we saw had some of the records because we had gathered some of them to give to our local neurologist who then passed them along to Boston.  But after obtaining yet another inconclusive test result on the EMG, the Boston neurologist wanted to review more records.

So I contacted the birth hospital, the local children's hospital, Dan's pediatrician, and the specialists that we saw more than once.

By the time I was done collecting paper records, in early 2011, I had an overstuffed 6" binder.  Some of them were duplicates, but I kept every single page together and organized it by provider.  That binder went with us wherever we went after that.

The floor doctor in Boston that we saw in June 2011 (when we got Dan's diagnosis) borrowed the binder for a few days.  When he came back, he told us he had noticed some abnormal blood levels that Dan had since birth - something that no one had ever noticed before.  The most unnerving part of it not being noticed is that the specialists were all located at the local children's hospital, so they all had access to the same information!!  And those abnormal blood levels (if noticed well earlier) probably would have led us to a diagnosis quicker.

Dan was born in 2006.  With the exception of his pediatrician's records, all his records were kept in a paper record.  Even his pediatrician had to print all the records, even though they were kept electronically.

So where does that leave us know?

I read an interesting blog post from Boston Children's Hospital on allowing patients access to their records.  Based upon a global study, 96% of US doctors thought patients should have at least some access to their medical records.  The amount of access varied - from being able to make simple updates (demographical data, allergies, medications, family history) to having full access.

But obtaining access to your records makes sense - if you have some radiological procedure (x-rays or MRI or something in between), you would rather have those images and report to give to another provider rather than having to complete the test again (especially if it has only been a few weeks).  Sometimes the report isn't sufficient, the images themselves are more important.

So the next time you go to a doctor or lab or somewhere that has medical records, if you think you may need them in the future, make sure you know how to get to them!  And remember, most offices only hold records for 7 years if you are no longer an active patient, so get to them quickly!


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