Two recent articles delved into what seems like a pretty simple question: Should patients read their own medical records? Particularly the notes doctors jot down in the course of diagnosis and treatment?
It seems like it should be self evident. Your medical records are, after all, about you. That means they contain information that might be relevant to your interests, and reading them could shed some light on some things. But, by the same token, they are about you. They are written with you in mind, all right, but not as a reader, and, as it turns out, sometimes they say things that are not particularly nice. While ostensibly people should be noting things on charts like the patient will be reading them, that’s not always the case, and I know I personally have seen some rather nasty comments on my own medical records.
Which, you know, it always irks me when I go to the doctor’s and the medical records are tightly clutched and whisked away whenever I approach. Very, very, very rarely am I left in a room alone with my medical records. They are handled as though they need to be kept confidential not just from the general public, but also from me, which I rather resent, because they are about me, and I might be interested in reading them.
In the Wall Street Journal, an article on the OpenNotes Project, where patients are actively encouraged to read notes, has some interesting revelations. The Project is showing that being able to view notes improves the doctor-patient relationship, especially for patients with complex medical problems, and it also improves overall quality of care. That’s a pretty solid reason to implement it in other places, especially since it could be streamlined with the development of electronic medical records; imagine being able to log in and see your notes and test results, to review them at leisure, to not have to sift through piles of paper to get to the information you need.
One point made in the article is that being allowed to read your records, and the notes specifically, might help you comply with treatment better. Patients often forget things they are told in the office, or don’t realise how important they are. The doctor duly notes them down, but the patient doesn’t internalise the information. If the notes were provided, the patient could review them, understand why the issue is important, and follow through.
This could result in avoidance of potentially costly medical problems. We patients are sometimes shy about asking for clarification or requesting more information. That means that sometimes miscommunications happen. On a small scale, it might result in momentary confusion until the matter can be cleared up, but in other cases? It could be deadly. If you’re taking the wrong dosage of a medication, or doing something differently because you thought that’s what you heard the doctor say…and this is an issue that could easily be resolved by reading your own files, and seeing the note that says ’15 milligrams,’ not ’50.’
For that matter, some of us don’t do too well with oral communication. If we receive information in written form, we internalise and process it better. That’s why I take notes at the doctor’s, because since I can’t see my file to see what the doctor claims to have told me, I have to take my own damn notes to make sure I understand what is being said. And I am trying to be better about asking questions, requesting clarification, even though I sometimes feel really foolish. Not necessarily by any fault of the doctor, but because we are so trained to sit and listen to medical professionals, not to talk back, and it takes a lot to say ‘I’m sorry, I just want to be clear, it’s important to take this medication at least an hour before a meal?’
Writing at the New York Times, Dr. Pauline Chen discussed the OpenNotes Project as well, talking about the tension between doctors and patients over medical records as well as the confusion about what patients are legally allowed to access[1. For the record, only psychiatric notes can be withheld from patients, if a doctor deems this ‘in the patient’s best interest,’ which is a subject for an entirely different post.].
Dr. Chen’s piece brought up a point I see coming up a lot in the debate about access and transparency: The attitude that patients are not intelligent enough to understand medical records and notes, and thus that doctors will have to waste time writing in plain language. I think that’s a big discredit to patients, because, well, for one thing it assumes that we aren’t capable of learning things and applying our knowledge, and for another, it assumes that we are incapable of looking something up if we don’t understand it. Looking over Mr. Bell’s medical record recently, I encountered a term I didn’t recognise from his anesthesia log, and I looked it up, and learned what it meant. Had I not been able to find a definition, I would have called the vet and said ‘hey, what does this mean?’
I think that transparency could really make doctor-patient relationships stronger. Better working relationships would result in better care. Perhaps if patients had their records as a frame of reference, they would not be so shy about asking questions. I know that I feel more comfortable when I have material to use as a basis for queries, and I feel most naked when all I have to rely on is my scrawled notes.
And access might make care providers more circumspect about what they say about patients, because they would say those things in full awareness of the fact that someday, in the near future, that patient will read it. And, believe me, ‘whiny bitch’ is not a medical term, and I understand it just fine.