Importance of requesting your Doctor's Notes

Posted by All_in_1963 @burrkay, Jul 25, 2018

Many Clinics and hospitals, including Mayo Clinic are implementing the EPIC software.
My wife and I are also Mayo Florida patients and we love the fact that we can quickly access, via the portal the doctor's notes after a meeting with him/her.
Our local provider, has recently implemented the EPIC software, and one of the tools is "My Chart", which I try to use to my advantage when encountering the multitude of doctors who my wife and I seem to see daily....welcome to old age!
After having had a followup meeting yesterday with my pulmonologist-following a number of tests he had ordered a month or so ago, I stopped by his office this morning and got a copy of his "notes" from our meeting. Again, I personally had to go there and request a copy of his notes, as they are not available via the new EPIC software tools. To my dismay, I found a statement in his notes…"Bronchoalveolar lavage of the left lower lobe showed evidence of malignant cells or infection."!!!!
Our meeting yesterday was cordial and up-beat. My pulmonologist made no mention of this…only that everything was GOOD! I have queried him this morning via My Chart, but the point of all this is, the new EPIC software does not allow the patient to access via My Chart the Doctors Notes. I had challenged this several weeks ago and was told that basically the reason was Privacy, etc…
Bottom line, the patient needs access to the doctors notes! Those of us who are technically proficient use these notes to gain a clear understanding of what was said, and act accordingly. Many doctors do not allow the use of AudioNotes to record the meeting.
Hopefully, in this case the statement was a "typo". However, I wanted to get the message out that it is important for the patient to get a copy of the doctor's notes and read it and understand it. If we have questions, ASK FOR CLARITY…this is very important!
Doctor's are human and do make mistakes. If the above statement was a typo, I will breath a sigh of relief. If on the other hand the doctor simply missed the diagnosis, I will be grateful for my inquiry.

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I go to Texas Medical Center for all my care. I have access to my Chart. I have seen notes from oncologist. I was in dentist chair and just finished when my phone Rang. It was primary care doctor. She went over everything with me. The symptoms of myloma if they worsen she will refer me back to oncologist. I feel good about it. I won't hesitate one minute if my symptoms worsen. Evidently the treatments can be worse than waiting and finding it did not grow.

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@burrkay Please do your best to stay calm until you hear back from your physician. You mentioned testing done about a month ago. It seems apparent to me that the result you reference in your post is one item out of a battery of tests to reach a final diagnoses. If the cells are malignant there are other tests that can confirm that result, which your physician may have also reviewed with your other lab work. If the abnormal cells are due to infection your other lab work would also confirm if it was an infection and whether or not it was viral or bacterial. I feel confident that the cumulative results showed nothing critical. However, you can always get a second opinion to be sure nothing has been missed. Good luck to you.

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@2011panc

@burrkay Please do your best to stay calm until you hear back from your physician. You mentioned testing done about a month ago. It seems apparent to me that the result you reference in your post is one item out of a battery of tests to reach a final diagnoses. If the cells are malignant there are other tests that can confirm that result, which your physician may have also reviewed with your other lab work. If the abnormal cells are due to infection your other lab work would also confirm if it was an infection and whether or not it was viral or bacterial. I feel confident that the cumulative results showed nothing critical. However, you can always get a second opinion to be sure nothing has been missed. Good luck to you.

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Waiting for results is very stressful. Doctors are scientists (our best scientists). I would really try to be focused on something you enjoy Right now ( a few of your favorite things). Pet your dog. Even better, exercise with the best exercise equipment you will ever have - your dog. Hold onto your faith. Marcus Aurelius said, you can take anything NOW, as long as you don’t add to it with your imagination. Take care. Have faith

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@oregongirl

I go to Texas Medical Center for all my care. I have access to my Chart. I have seen notes from oncologist. I was in dentist chair and just finished when my phone Rang. It was primary care doctor. She went over everything with me. The symptoms of myloma if they worsen she will refer me back to oncologist. I feel good about it. I won't hesitate one minute if my symptoms worsen. Evidently the treatments can be worse than waiting and finding it did not grow.

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Thank u for your response! That’s the way is should work! I think it’s the health providers tech team...they simply have to turn on the feature I suspect...don’t know why they continue to give me push back on it.

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@2011panc

@burrkay Please do your best to stay calm until you hear back from your physician. You mentioned testing done about a month ago. It seems apparent to me that the result you reference in your post is one item out of a battery of tests to reach a final diagnoses. If the cells are malignant there are other tests that can confirm that result, which your physician may have also reviewed with your other lab work. If the abnormal cells are due to infection your other lab work would also confirm if it was an infection and whether or not it was viral or bacterial. I feel confident that the cumulative results showed nothing critical. However, you can always get a second opinion to be sure nothing has been missed. Good luck to you.

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Thank you for your concern. I was pretty sure it was a typo, and doctor has now confirmed that.
The concern I have is that Mayo will no longer allow access to the doctors notes when they switch over to the Epic software.

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Doctor’s notes are extremely thorough. 1000 pages (one-thousand) were generated for just one visit to the hospital ( for 4 concurrent UTI and sepsis followed by “at Home” self administered IV antibiotics). Medical staff members are true scientists, with exquisite attention to detail. We as patients (and I have been one for 19 years) are given a thumbnail sketch. I think TMI can overwhelm us non- medical folks. My advice - talk to your Doctor.

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@user_cha272278

Doctor’s notes are extremely thorough. 1000 pages (one-thousand) were generated for just one visit to the hospital ( for 4 concurrent UTI and sepsis followed by “at Home” self administered IV antibiotics). Medical staff members are true scientists, with exquisite attention to detail. We as patients (and I have been one for 19 years) are given a thumbnail sketch. I think TMI can overwhelm us non- medical folks. My advice - talk to your Doctor.

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My husband had sepsis after heart surgery. Severàl people in hospital were affected at same time. Mayo states cause is of nurses not washing hands. Simple as that. I cared for him at home. I was highly contious of wearing gloves when taking care if him. He was cured. But ER folks were always told please wear gloves when taking care of my husband. Change gloves after every inspection of him even after he was cured. Terrible disease.

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@2011panc

@burrkay Please do your best to stay calm until you hear back from your physician. You mentioned testing done about a month ago. It seems apparent to me that the result you reference in your post is one item out of a battery of tests to reach a final diagnoses. If the cells are malignant there are other tests that can confirm that result, which your physician may have also reviewed with your other lab work. If the abnormal cells are due to infection your other lab work would also confirm if it was an infection and whether or not it was viral or bacterial. I feel confident that the cumulative results showed nothing critical. However, you can always get a second opinion to be sure nothing has been missed. Good luck to you.

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Why

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https://www.opennotes.org/
@burrkay I agree with you and there's a US movement, really a world wide movement, to democratize health care and keep the patient in the loop - even screen sharing. It's controversial though because many patients don't want to know. Some of us do and should have right to see out own notes IMHO. I've never seen one I couldn't translate using Google! If you look at the open notes website you will see research into this.

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Thanks for the responses. Many of us don’t want to know the details. I on the other hand do, and can no way retain all the “medical speak” during an encounter with my doc. Thus, I access the doctors notes (if available) after any visits to see what I may have missed. Google is a wonderful tool to simply highlight a Greek word and get an interpretation.
Today’s docs don’t have the time to explain all the details. Many clinics are demanding that they see more patients per day, and be less engaged in conversation...all the more reason for the patient to be attentive to the details.
Bottom line...for me...I want to know! I will converse with the doc, but I often later think back on what was said and simply can’t recall Some pertinent details.
Also, the notes are helpful when family members ask about what was discussed. My wife is a stage 4 Lung Cancer patient. Our adult children live far away. When we see my wife’s oncologist, they want to know what was discussed. The notes are very helpful for me to pass along to them and keep them informed.

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