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 access1.
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.
- 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. ↩

I Read Romance Novels. So What?
Guaranteed conversationstopper in a group of people who like to consider themselves liberal and well educated: The words ‘I read romance novels’ or ‘I was reading a romance the other day and…’ or some combination thereof. Romance novels, you see, are simply Not Done in our circles.
Well, I’ve got news for you: I read romance novels. No ifs, ands, or buts. I read romance novels, and I like them. In fact, some of the most socially progressive fiction I’ve read in recent months has been in romance novels. I read them all. Paranormal romance, historical romance, you name it, I read it. And I enjoy it. Rather a lot, actually.
People often appear aghast when I make this statement. For some reason, it’s ok to write romance novels, especially if you do it in an ironic and hipster ways, but reading them is taboo and verboten. Like young adult literature, romance novels are highly stigmatised. People who have never picked up a romance novel in their lives seem to know a whole lot about what’s under the covers, and they will expound at length, usually without needing to be invited to do so, on the evils of romance novels if they catch wind of the fact that you read them and enjoy them.
Romance novels are trashy. They are mindless entertainment. They are popcorn novels. They are socially regressive. They feature troped and boring plots. People who read them are mindless drones incapable of independent thought. Reading romance novels is evidence of being suspect, intellectually. Why would you read Georgette Heyer when you could sit down with a nice Haruki Murakami1? All these beliefs are things I encounter all the time whenever romance comes up. Reading romance is treated like a waste of time and energy.
Well, I get to decide how I spend my time and energy, and sometimes, I like to spend it reading romance novels. Sometimes I deliberately read books that are incredibly cheesy and silly and have no real value. Why? Because I spend all day, every day, writing and reading serious things. I am steeped in so much written material, I shit 10 point Times New Roman. So, yeah, sometimes I like to have a little brain blowout with a book that doesn’t require a lot of energy and thought. Sometimes, I like to lie on my deck in the sun with a silly novel and a bowl of cherries, waving my legs in the air and chortling to myself at the ridiculousness, yelling at the characters and feigning shock and surprise about sudden plot twists.
But, you know, not all romance is completely silly and mindless. And a lot of modern fiction is. I don’t understand why a book is suddenly deemed to have no redeeming value whatsoever if it has a Harlequin imprint, but it’s the greatest thing since sliced bread with a penguin on the spine. What distinguishes these two books? It’s not necessarily quality and nature of content, it’s how people think about the content.
Let’s compare and contrast two books I read recently: David Mitchell’s highly acclaimed The Thousand Autumns of Jacob de Zoet and Charlaine Harris’ Dead After Dark, a reread for me. One of these books was filled with embarrassingly rampant Chinoiserie, objectification of Japanese women, ridiculous cultural stereotypes, and mindnumbingly predictable plot lines. The other contained embedded social commentary, wry humour, and, yes, very predictable plots.
While I would argue that the quality of the writing in Mitchell’s book was better, because he has a fantastic gift with language and paints absolutely beautiful pictures on the page, in terms of actual social value? I’d put my money on Harris. And it’s Harris I will be reading again, because Mitchell’s treatment of Japan and Japanese people pissed me off so much that I can’t imagine enjoying the book all that much if I enjoy it again. No amount of flowery prose can cover up the stench that hovers over the rest of the book.
Yet, I would be praised for reading Mitchell and mocked for reading Harris in a lot of circles, thanks to snobbery about literature and the belief that some kinds of literature are better than others. We’re told that mystery novels are a cheesy waste of time, but the oldest literature in the world is based on mysteries, tangled plots and conflicting loyalties and sudden plot twists. And the literature renaissance that happened in Victorian England, revolutionising English literature, a lot of that consisted of mysteries; you may read Wilkie Collins and laugh now, but he had an impact on the literature not just of his era, but of future generations of English writers.
So, you know, you can mock people for reading romance novels and sit smug in intellectual elitism and pride that you don’t touch ‘garbage,’ but keep in mind that many highly praised authors and books are pretty trashy, if you ask me. I care about what’s between the covers, not who wrote it, not the category it’s found in at the bookstore, not the lurid cover art.
Some of the most socially progressive literature right now is in genres like young adult, romance, and science fiction. These genres, traditionally treated as small potatoes, have authors who are willing to take risks and can take them, because they are established, and because publishers are willing to take more of a gamble. I’ve read more honest, accurate, interesting, challenging, and dynamic depictions of people with disabilities in romance novels than I have in mainstream literature, for example. I’ve also read my fair share of depictions that make me want to scream, of course, it’s not that every book in this genre is perfect and romance novels are rightly known for their fare share of rapey and racist plots. But that doesn’t mean that all of these books should be painted with the same brush; it does a disservice to them, and to their readers.
Related reading: Adrienne’s ‘Help! I’m…a feminist romance reader?‘