The Dilemma
Some doctors don’t want patients to see their records. Other doctors recommend that you always get copies of your medical records. If doctors don’t agree on this topic, how are patients supposed to know what to do?
I can see both sides. If I have a copy of my records, then I know exactly what the doctor is saying, I can easily share the information with any other doctor who might need it, and I can verify the accuracy of my records and address potential errors. On the other hand, I understand that doctors might need a place to keep track of information that nobody else will ever see (I don’t like it, but I understand the need).
Doctors’ Records
Viewing chart notes from two different doctors was eye-opening.
My PCP (who walks on water) follows a standard format. These notes are reasonably legible and (at least the ones I looked at) accurately reflect what occurred at the appointment.
My previous rheumy had two different forms for taking notes. The information documented at each appointment varied depending on which form he’d happened to grab that day. Format might not matter, but consistency and accuracy are pretty important, and those were lacking. He’d do a joint count without checking all joints (ignoring those that hurt the worst). I discovered that he was documenting “normal” skin without doing an exam (I didn’t complain and he didn’t ask, so he never knew about the itchy, scaly rash that caused me to hide my arms under long sleeves. I hadn’t known it was significant, and didn’t know until much later that he was making diagnostic decisions without telling me what he was looking for).
I believe that taking the time to read my chart notes was valuable. I like my PCP, but that doesn’t necessarily mean he’s a competent physician. I think he’s good, but how can I really know? Seeing the accuracy of my PCP’s chart notes instills confidence that I’m getting good care from him. I know that what he documents is really what took place at the appointment, so he really heard what I was saying. On the other hand, I never really felt that the rheumatologist was hearing me, and that impression was confirmed when I read his view of my appointments. Seeing the inaccuracies in his notes helped me see that I needed to find a rheumatologist who would listen to me, one I could trust. I’m glad I read the notes of both doctors. It was well worth doing.
Patient’s Notebook
I think it was helpful for me to read my chart notes, however, having done it, I don’t believe there is a need to maintain my own copies on an ongoing basis. Instead of repeatedly asking for copies of my doctor’s documentation, I keep my own records. I’m hearing of more and more patients who do this. Here’s a description of my system.
My Opinion
If my doctor listens to me and provides effective treatment, then chances are that the chart notes are pretty good. When I’m getting good treatment, maintaining my own copy of my medical chart won’t get me any better treatment (requesting copies certainly annoyed my PCP’s office manager, which is counter-productive).
There are other times that having a copy of my chart notes could be helpful:
- If the doctor is going to share this information with anyone else, it’s a good idea to know that the information is accurate.
- If treatment isn’t working, reading the chart notes could provide useful information.
- If the relationship with a doctor doesn’t seem to be working, a copy of the chart notes might reveal the problem (and will make it easier to transfer to a different doctor if needed).
- For people who move frequently, it could be useful to be able to hand-carry your records from one doctor to the next.
What do you think?
∞ itis 
I always try to get copies of any tests, bloodwork, surgery reports or pathology. I see so many doctors that it would be impossible for them to forward everything I have done to every other doctor. I have found that even the ones who say they communicate with each other often miss important papers. It is easier for me to just have the copy of bloodwork or whatever than to wait for one doctor to send it to the next.
I have never asked for copies of chart notes. First of all, I don’t think I would be able to decipher most of what my doctor writes (all of my doctors have terrible handwriting because they are so busy and writing so fast). I guess I’d love to read the notes out of curiousity but since I don’t feel it is usually medically necessary for me to have them I don’t ask. Although I do find that kind of stuff fascinating to read. If ever I felt like my doctor wasn’t hearing me, I would probably request them just to see if everything was in there but otherwise I don’t think I would.
My PCP’s writing is more legible than mine (which, admitedly, doesn’t set the bar very high). Plus he usually uses a scribe whose penmanship is impeccable. I’ve never had any problem deciphering things. It’s been more of a challenge learning what the different abbreviations mean. Pretty interesting, but not something I’ll continue to request. If you click the “notes” link, I included a sample of the chart notes when I saw two different doctors for the same problem.
I don’t have copies of most of my notes, but I do have copies of all of the correspondence between my three Toronto cadiologists when they were making decisions about my surgery. The first cardiologist I had was a really lovely man, and he knew I was feeling frustrated with the number of appointments and specialists I had, so he made me up a package with all of their emails and letters back and forth. I am very, very happy I have that.
I’ve been shown chart notes by some of my other docs, but I haven’t specifically asked for them. Thanks for a very helpful discussion of the issue.