The Robert Wood Johnson Foundation has dedicated $1.5 million to find out whether giving 25,000 patients access to the notes written by their 100 primary care physicians is a good thing.1 I can offer some perspective on this subject – for free – based on around 125,000 patient encounters over 25 years by one primary care physician.
First, some background
As a first-year medical student, I took a required course called “clinical process.” It introduced us to the art and science of treating live patients, as opposed to the cadavers that were our frequent companions. I'm sure I learned a lot from the experience, but selective memory being what it is, I only remember three things. Two of them were wrong.
The one right thing was that the patient's history was far, far more important than the physical exam. That astounded me at the time, but I was pretty naive. (I thought that whether one's belly button was an “innie” or an “outie” depended on how it was tied.) Our professor, a renowned internist, long since dead, taught us correctly that “If you listen to the patient, he'll tell you what's wrong.”
As for the other things I remember being taught, the first was that a good clinician must maintain a professional distance from the patient. Shaking hands or addressing someone by first name threatened our authority, and relating personal anecdotes by way of explanation or reassurance was simply beyond the pale. That turned out to be pure bunk. St. Paul wrote to the Thessalonians, “Because we loved you so much, we were delighted to share with you not only the gospel of God but our lives as well,” and I thought that was a pretty good example. As an exceptionally happy and successful family physician, I can't imagine weeding my way every day through a schedule of professionally detached strangers. What fun is that?
And then there was the hokum about the necessity to never, never let the patient see my notes. Or the consultant's notes. The shock might trigger apoplexy or dropsy or consumption. It is this conception that the “Open Notes” project is attempting to explore. I'm going to tell you what they'll find.
My 25-year experiment
From the first day I opened my practice in 1986, I gave patients a loose-leaf notebook with around 20 pages of general medical information. My encounter forms (paper, of course) were produced on NCR paper (that's “no carbon required,” for you young'uns), and they were three-hole punched so my patients could file a copy of every note I wrote about them. They also got copies of anything else they wanted to store – lab work, X-ray reports, even consultations. Nothing held back. No secrets.
In The Wall Street Journal article2 describing the Open Notes experiment, a number of questions were raised, such as “Will this cause patients to recall more accurately what was said and done in the exam room?” “Will patients panic if their doctor speculates in writing about cancer or heart disease?” and “Will patients misinterpret medical abbreviations like SOB and OD?” (Personally, I'm taken aback that my local ER is now the ED, but that's beside the point.) Out of 125,000 encounters, I can honestly say that I can't recall a single instance where any of these things happened. So, I don't think Open Notes will have the expected effects on patients for good or ill.
However, I can predict two things that will happen, as surely as the sun rises in the east.
First, sharing notes with patients will make physicians more honest. The electronic health record (EHR), for all its virtues, is oriented primarily toward malpractice defense and justification of charges. On the downside, it encourages fudging, big time. When my patients are seen at a local ER/ED, I get six pages of faxed notes – for a sore throat. There's no way anyone in their right mind is actually asking or doing all that stuff. When my nurse recently went for a five-minute surgery consult, the two-page report I received was greeted with hoots and hollers: “He didn't ask that! He never touched me there!”
Sending my patients home with a copy of what I actually wrote keeps me honest. The same would hold true for an EHR, of course.
Second, it engenders trust. Patients are often afraid. One of the things they're afraid of is that their doctor isn't shooting straight with them. I'm not going to pretend that I put in my notes every thought or fear that goes through my head. But my patients honor me for my honesty: What I say, I mean, and what I wrote, I meant.
Trust has a huge by-product. It saves time because I don't have to prove myself at every patient encounter. My patients know I'm giving them my best shot, straight up, every time they see me. That cuts down on questions that are really probing my honesty and sincerity rather than the problem at hand. And saving time means making money, because time is money for every piece worker – whether he is sewing garments in Bangladesh or seeing patients in Topeka.
The bottom line: Trust your patients. They'll reward you, in spades.