Have you ever wondered what your doctor is writing as he or she is busy scratching away in your chart? What strikes him as being important? What does she ignore? Or is he just drawing cartoons in the margins? (For the benefit of those readers who are actually my patients I can honestly confess that I’ve never doodled cartoons in your chart as I listen to you—my cartooning skills are simply too inadequate.) If you were to read my hand-written notes they would go something like this: Srmfth kllmquis is hmmelsh fluthyig percquler hablehc. My writing is no better than another doctor’s, since we all took the same “Illegible Handwriting 101” course our first year of medical school.
What’s more revealing is the final dictation that ends up in your doctor’s record. Once she’s done visiting with you she takes to the computer keyboard (in the case of the computerized medical record) or to the Dictaphone to produce a more legible and lucid summary of your visit. It includes the stuff you told her, her exam findings, and her impression of your medical problems. It concludes with whatever recommendations she made to get you feeling better. It basically summarizes her version of the interaction you two just had.
How’d you like to get a hold of that report?
Well, you may not realize this, but you’ve been able to for some time now. Ever since Congress passed the Health Insurance Portability and Accountibility Act (HIPAA) of 1996 you’ve had legal write to not only cast eyes on your medical record but to also make amendments as you see fit. Give it a try sometime. March into your doctor’s office and ask to take a glance at your folder (or electronic file, as the case may be). Odds are pretty good the clerks at the front desk will give you a funny look, but rest assured they are legally obligated to turn the whole stack of papers (or electrons) over to you. Some offices will charge you a “processing” or “copying” fee, others will allow you to see your record only under the watchful eye of a clinic employee, and some may simply deny you access, not being familiar with a legislative change that went into effect 14 years ago. Still, the law is on your side and you have every right to exercise your privilege.
Let’s pretend that after reading this post you decide to drive down to your doctor’s office and ask to see her most recent dictation about you. As you stand there at the front desk and ask for your chart what do you imagine is going through the mind of the receptionist? This patient is going to sue us. Or, this patient is obsessive-compulsive. Or, this patient is going to switch to another doctor. I seriously doubt they would be thinking this patient has a rational concern about his own body, would like to be a better partner in his own healthcare, and is improving the process by educating himself.
Nope—they’re thinking you’re nuts.
The funny thing about all this is that it rarely happens. I can’t say for sure how many of my patients have requested access to my notes about them but I’d guess that less than 5% of them ever get the urge to check out their charts.
Or, maybe they do, but they’re just afraid to ask.
The most recent issue of Annals of Internal Medicine contained a paper outlining the OpenNotes project:
“ ‘a demonstration and evaluation project in Massachusetts, Pennsylvania, and Washington, in which more than 100 primary care physicians are inviting their patients to read their visit notes through secure electronic patient portals.’ These clinics are taking a step beyond simply allowing their patients open access to their records upon request—they’re suggesting their patients sign in to a secure site to see every detail of their file at a moment’s notice.”
I actually really like this idea. Maybe the reason so few people ask to look at my notes is that they’re afraid they’ll be branded as problem patients. The OpenNotes project solves this problem by allowing patients to search their record in the comfort of their own Starbucks store without having to interact with a snoopy medical records clerk or suspicious nurse. As a doctor, I’d never know which of my patients has dug into my most recent ramblings about them.
Several large news outlets wrote stories about this publication, including the New York Times, in which the author—a physician—expressed similar notions as my own as she described a scene where an elderly couple requested access to their charts:
When I mentioned the request to one of the nurses outside the exam room a few minutes later, her eyes grew wide.
“Oh no, you can’t do that,” she said, shaking her head. “I don’t think it’s legal.” The other doctors and nurses, attention piqued, moved closer to listen. “Send them to medical records,” she urged. “He can sign the release papers there.”
Another nurse in the growing crowd offered her own advice. “Do you know what’s going to happen if you give them a copy now?” she asked. “They’re going to start calling and e-mailing you with questions about what you wrote.”
The doctors and nurses began clucking in agreement. “Think about it for a second, Pauline,” one doctor said with voice lowered. “Maybe they are thinking of suing you.”
There was a collective gasp from the group now gathered around me; and I could guess what they were thinking as they craned their necks to peer into the exam room where my elderly patient was busy fussing with his papers as his wife stood adjusting the canvas fishing hat on his head.
The article, and the numerous reader comments on the website, went on to speculate about the other hazards of allowing patients to rifle through their record. What happens when a patient comes across confusing terminology or encounters some of our cryptic abbreviations and acronyms? The phrase “This 42-year-old well-developed female with SOB” could be misinterpreted as derogatory commentary on the patient’s physique and choice in husband, rather than the intended meaning (well-developed means not malnourished, and SOB is generally translated as shortness of breath; although I have met some unfriendly spouses for whom the phrase could serve as a double entendre).
What happens when they read the part of my note where I speculate what other diagnostic possibilities might account for their symptoms? While the patient’s SOB is most probably caused by his known emphysema, less likely possibilities could include coronary ischemia, congestive heart failure and occult malignancy. Most people would recognize that I’m simply speculating (or, rather, doing what I was taught in medical school: developing the differential diagnosis) but some might infer that I have secret knowledge about their impending doom that I’m withholding from them.
And when they come across slight abnormalities in their testing—abnormalities that I gloss over during my visit with them—will they suspect me of indifference or poor judgment? If I don’t explain my theories as to why their AST (a blood test reflecting function of the liver) is a point higher than the norm, will they inundate my office with phone calls and demand additional testing?
Well, these are the fears that have been expressed by doctors, nurses and some patients. Personally, I don’t think any of them hold water. The way I see it, these objections are nothing more than a diversion from the real concern of the medical establishment: we are afraid of giving up control.
Ever since Hippocrates scribbled illegible medical notes (and, perhaps, little cartoon doodles) onto parchment we’ve had complete control over the documents that record the interaction we have with patients. We’ve invested so much into our system of medical record keeping that we’ve come to believe that it belongs to us rather than the patient. And on some level we’re still suffering from the paternalistic views of our professional forbears: the best patient is an uneducated and subservient one.
Sure, there may be some who will become confused as they read through the technical lingo of our profession, and there may be others who become fearful when they peruse the cold and relatively impersonal recounting of their health problems, but my guess is that most patients will appreciate the additional information that comes from being able to lay eyes on their record. Those patients may also want to exert more control over how their care is provided and we may find that they become more like partners in the process rather than passive customers, a proposition that I have no objection to.
Proponents of the open access movement claim that patients who have access to a summary of their office visit will be more likely to adhere to their doctor’s suggestions, can help improve the accuracy of the record, and will ultimately develop more trust in their physician (a nice table summarizing the pros and cons of OpenNote is available here). I’m not sure how my patients would respond to such an opportunity. A few years ago when I was in the military we had an electronic medical note system that allowed me to immediately print a copy of the report for my patients as they left my office. Most were politely grateful, some were indifferent, and only rarely did I get any feedback or questions about what I’d written.
Will open access be a disaster (as some people fear) or a blessing (as others hope)? I don’t have a clue. As for all my patients, please feel free to come take some time reading through my notes about you. Because, to be honest, the only concern I have is not that you’ll become confused or enraged or frightened by what I’ve written about you, but that you’ll be struck with a profound and potentially dangerous attack of boredom: my notes are not really all that fascinating. While I may wax verbose in my blog posts, my office dictations are dry, concise, and include no commentary from me about your choice in husband.
And they don’t even include cartoons.