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Changing Medical Records? Possible? How?


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My daughter had a very difficult time getting diagnosed with both POTS and EDS. There was much skepticism in a large medical system that is near us. Only the geneticist was kind, considerate and knowledgeable. He just didn't want to rush into a diagnosis and then have her forever labeled with "that" and have doctors unable to see beyond "that". So he did not make a definitive EDS diagnosis when he saw her 2 years ago. (she was diagnosed with EDS last year at another facility)

But the ortho, sports med???, cardio, pain management..... We have a strong sense that she was dismissed as possibly 1- lazy or 2- drug seeker or 3- attention seeker. And I was probably not written up very positively either. One dr. diagnosed her as "that" and the others who saw her seemed to have followed along lock step in their assessment. Unfortunately, our family dr. followed their thinking as he read their notes. When I last saw him and handed him the TTT, etc. results, he murmured that POTS was so hard to treat.

This facility is less than an hour away. The other possibility that may have competent help is 1 1/2 hours away. DD wants to write off the above facility. Forever. Everyone in it. Period.

Can you change your medical records if misdiagnoses are in it?

Can you make them change wrong characterizations?

Should I look into getting records with the family doctor changed, too?

I don't know how important it is and will be for her future medical needs and disability if it ever came to that to have those records standing as is.

So. Experience? How-to's?

Thanks again.

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I think next to impossible to change records. You may be able to include your own letter to add to her medical file. Possibly most people here have had the experience you speak of so the Dysautonomia specialists generally have seen that a lot and it shouldn't phase them.

I have been told my son's medical records will be sealed when he is 18.

He has "that" in his also, by a neurologist who even knew about his dysautonomia/POTS diagnosis from Mayo no less.

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Yes, you can - but, it's really hard and a long drawn out process. You can submit what needs to be changed and why. It will be reviewed to see if they will change it. Then if they won't change it you can write a letter that would be included in your file with each page of the records with a footnote to see your letter. Then, there is nothing else you can do - but have the letter included and the note made that you disagree with what was said and why. It can really be a headache and very upsetting.

I don't allow any of my records to be SENT to any other doctor. I choose what I will share with another doctor and I deliver what I want them to have.


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Issie, that is what I have done, I have copies of records and send what is pertinent and timelines I have done. I am pretty sure they appreciate this anyway, what busy Dr. wants to wade through hundreds of pages of records. No one has asked for more and I think the specialists really want to come to their own conclusions anyway.

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I'm so glad to hear I am not the only one who selects what they want shared with each doctor. Since I started doing so, I honestly cannot believe how many mistakes are in my records - on top of the so-called diagnoses some doctors have given. I've been reviewing my daughters' geneticist reports this week (evals for H-EDS), and she totally flipped histories and symptoms more than once!

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I have not ONE recorded note from a Doctor that is completely accurate..........so upsetting!!!

As far as getting the changed, NO you can't. It's like Issie said you can fight like crazy and possibly get an "addendum" that sits on top of your file and tells them to read the addendum about "such and such"

But the record itself doesn't go away.

I was able to get one doctor I saw whose notes had me listed as currently working (when I wasn't and was tryign to get on diability) to amed her notes with an addendum on that page to correct it.

even that took almost a month and only happened because a fried of a friend new a social worker who knew the assistant of the doctor.

i put in appeal and grievace for one doc I saw because the notes were sooooo wrong, it's been 2 years and I've heard nothing. spent days writing the appeal letter, oh well. not worth the time.

I think things will be ok since your child is under age, the recors should be sealed at 18 I think.

I also, try to only send what i want, though I do trust my PCP for the most part to send what they think is pertinent with a referral when they do one.

My files are literally about 2 reems of paper thick and it just gets to be too much for me.

There are still records I don't have and am fighting to get too.

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Thanks! Now. Just what does "underage and records sealed at age 18" mean? And what will the new "electronic records" push with the new health care law do to our desire to move on from an unhelpsul doctor or health system and see another professional with a "clean slate"? Call me skeptical.....paranoid......

What do you say in an addendum? To you reference tests/doctors notes who have supported the diagnosis, etc.?

I just requested the release authorization form from the health complex and will stop by the family doctor clinic this afternoon to request records. At least I'll know what she's been up against.

Thanks again.

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Fwiw, I'm sure all doctors know how other doctors can make mistakes or jump to conclusions

based on bias so I wouldn't worry about it. If you're seeing a doctor who cares about you, this

won't matter.

Funny story .. I was having some legal problems with an attorney once when my attorney told me not

to worry about the other attorney. He said that some attorneys make it a practice and get a thrill

out of seeing how big of an Asset (you know what I mean - lol) they can be .. That's all it took for me to realize, that can happen

anywhere ..

Tc .. D

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  • 3 weeks later...

For the longest time there were 3 sets of medical records for me: 1) My copy, 2) Dr's copies which were shared with the insurance cos, 3) Dr's copies which were NOT shared with the insurance cos.

When I see a new Dr, I will bring along copies of the relevant (and correct!) parts of my medical record for them. Most of the doctors don't seem terribly interested in them these days.

As far as accuracy, it's scary just how incorrect they are! I've seen everything in mine from the wrong age, incorrect test results, even the wrong gender. The one which I took most offense to was a note of "past hx of subst abuse". I've never been drunk in my entire life, never have smoked, never tried drugs. The doctor just brushed it off saying "it's not important". If we had digital medical records, I could see that one right there costing me a job or security clearance.

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I'm in Australia and am heartily against the centralized computerised medical records --or whatever they call it -- that will be available to all docs. if the govt passes this legislation (it's early days yet). The reason is because my records have so many mistakes in them. Doctors telling other doctors that 'patient notes such and such' and I'll have had 'noted' no such thing. Plus I worked in a mental health facility for some time and one of my jobs was to read through patients files to find out which ones were no longer active (this was, admittedly before computers). I was horrified one day to find I was reading the file of someone I knew well. I've never told anyone about what I read about that person but I've lived long enough to know everyone is not like me. Imagine the lady down the street who's a doctors secretary having access to all your records. It will happen. These systems are all open to abuse.

4 and half years ago when I was in hospital for what turned out to be a 3 week stay I got a gander at my medial records (most of my docs are at that hospital so most of my records are there in one huge file). They'd bought me back from an ultrasound and one of the guys that had bought me back left my medical records on my bed (they try to keep them away from you, lol, not sure what they are thinking). I spent a couple of hours reading through them and correcting them with a pen. Not sure what docs think of that when they see it.

Last time I was in for the day for an endoscopy (last november) I was again left with my records for about an hour and yes, more mistakes had been made, so I corrected them again. Things like "the patient did not say that.": and "no, the patient does not have this problem but has that problem which is not noted anywhere". The only thing they get right is my allergies. They don't mess with that as I have so many drug allergies and that is taken really serious. Guess they don't want to kill me, after all. But really, allergies are not the only serious thing. And I suspect they gave me contrast dye for the ultrasound endoscopy because my skin reacted badly that night. I will be getting my allergist to check the files.

There's a big advantage to going to just one hospital here. That the records are in one place. And that I can get to correct them. LOL. I don't care if they want to chose to think I'm crazy. Those corrections will make them think. And I often wonder -- it could be the transcribers making the mistakes. It's an imperfect system.

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