Poll Are Provider Comments in Your Medical Records Affecting Your Care?

[VintageME]

I'm a graduate student in a public health program and have been studying the impact of subjective comments in patients' medical records when they see a new provider. I think this is likely an issue for many of us with ME/CFS and even more so now with mandatory electronic records. I am exploring the idea of a study on prejudicial comments and would appreciate your participation. Please share any stories that would be helpful as well.

 

[VintageME]

This is an article that mentions a recent study showing the potential negative impact:

Prejudices in Medical Records are All Too Common

 

[Creekside]

I'm not sure whether it falls under "comments", but I had one GP forget to write a referral that he said he'd write (that was the purpose of that visit), and when I asked about it, there were no records of my past several visits (he was terrible with record-keeping). I filed a formal complaint, he was found at fault and required to take remedial lessons in record-keeping, but after that, at least one doctor at that clinic refused me as a patient. I did find another who accepted me, so not a big problem, but I can imagine I'm in the system as a "troublemaker", especially since my "mysterious illness" (ME) was still undiagnosed.

 

[Snow]

I notice a consistent problem in my records: the providers do not accurately record what I tell them. For example, I stated I was unable to climb a flight of stairs without PEM. I was very clear about this (my husband confirms this - he attends all of my appointments). The NP recorded that I was a 40 on an activity scale which means: able to climb two flights of stairs, perform heavy housework and climb a hill. In the same visit I said "yes" to having abdominal pain and I described the location and quality of the pain. The NP recorded "denies abdominal pain". I did not request a correction, because I am afraid of being dropped as a patient. I have already been refused care, because I am "complex" (EDS, CCI, MCAS etc.), so I did not want to lose my primary doctor by attempting to correct her NP.

My medical records are not accurate, despite me being very clear and concise with my answers. This makes me feel disbelieved and, therefore unsafe under their care.

 

[Tammy7]

@Snow I noticed this also sometimes with my GP. The notes sometimes are grossly inaccurate. One time they were so inaccurate that I called the office and complained and told them I was very upset and demanded the Dr. change them.

 

[spark_matter]

Anyone else's pain numbers get changed regularly? Found a bunch of "3/10" in my chart from the pain clinic I went to for constant 8/10 nerve pain😠
If you can, watch the screen when they type stuff in, i have caught mistakes before they become permanent that way. For example, one time a nurse asked about chronic issues and i said "myalgic encephalomyelitis also known as cfs" and she put "symptom: ongoing fatigue" in my chart. Luckily i saw that and stopped her because that is quite the error!

 

[Tammy7]

For example, one time a nurse asked about chronic issues and i said "myalgic encephalomyelitis also known as cfs" and she put "symptom: ongoing fatigue" in my chart. Luckily i saw that and stopped her because that is quite the error!

There is finally an official ICD code for CFS/ME. G93.32. I told my Dr. I wanted that put down as an official diagnosis in my file. (my main diagnosis). Just thought I would let you know in case you didn't.

 

[spark_matter]

There is finally an official ICD code for CFS/ME. G93.32. I told my Dr. I wanted that put down as an official diagnosis in my file. (my main diagnosis). Just thought I would let you know in case you didn't.

That's awesome! I didn't know we had a code yet, finally!
I have it in my problems list already, for whatever reason this nurse was just editorializing an unnecessary amount and decided to double check all my info (she also tried to put down a past med adverse reaction as "anaphylaxis" because she didn't know what "respiratory depression" is and apparently didn't think to ask 🤦)

 

[BeckyGillespie]

I just met with doctors at the Mayo two weeks ago and received a diagnosis of both ME/CFS and POTS. The physician who provided the main diagnosis for both of these said that I also have fibromyalgia, but he did not want to add it into my official medical record because of the stigma associated with that diagnosis. He said they’ve seen plenty of patients who have fibromyalgia that see physicians for some new reason but then get dismissed because the doctor chalks it up to their fibromyalgia, but then later it turns out they did have a different series medical issues going on.