Patient Access to the Doctor's Notes

With funding from the Robert Wood Johnson Foundation, the Beth Israel Deaconess Hospital in Boston is starting an "open notes" study, in which the patients of 100 physicians will be able to read their doctor's notes on line. I read about the study in an excellent article in today's Boston Globe. Here's the essence of the article:

Researchers hope to learn whether the notes prove more useful than objectionable. They hypothesize that access to doctors’ notes will improve care partly because patients will become more knowledgeable about their treatment and about their doctors’ instructions.

Studies show that “patients remember precious little about what happens in the doctor’s office,’’ said Dr. Tom Delbanco, a Beth Israel Deaconess internist and a co-investigator.

The Robert Wood Johnson Foundation gave Delbanco and his colleagues $1.5 million for the project because doctors have “strong differences of opinion about this. But there is almost a religious character to the debate. It’s uninformed by evidence,’’ said Stephen Downs, an assistant vice president at the foundation. It will be the largest study yet on the issue, he said.

I think it's a great idea!

For the last 10 years of my psychiatric practice at Harvard Vanguard Medical Associates I wrote my own notes directly into an electronic medical record. Although I'd been taught as a resident not to make notes while with the patient, I'd found that waiting until after the appointment or the end of the day resulted in more meager notes. Luckily I'd learned to touch type in middle school, and was able to keep the keyboard on my lap and maintain eye contact while I typed.

But from residency itself I always wrote my notes with the assumption that the patient would read them. The discipline this imposed was useful. As an example, it helped me in relating to people with paranoia. I didn't write "Mr. Jones is paranoid and delusional," but rather "Mr. Jones believes extra-terrestrials have implanted a chip in his brain. He understands that I do not share this view. We discussed why I believe taking anti-psychotic medication would help him in his life..."

I found that people with paranoia appreciated that I recognized the possibility that (in this example) extra-terrestrials might be causing mischief, but that I found this extremely unlikely. We could frame using medication as a hypothesis - "whether or not there is a chip in your brain, I believe that you will sleep better and be less afraid after a few weeks..." rather than as the equivalent of "you're crazy and I'm sane so you should do what I say..."

Writing notes with the patient in the office allowed for discussion of what should be said. With someone I'll call Mr. Jones, it had taken quite a bit of time to elicit a clear picture of how much alcohol he used and how alcohol might be affecting his mood and his physical health. I explained why I thought it was important for his primary care physician to know about his alcohol use. We sat together in front of the terminal to compose my note. Mr. Jones baulked at the word "alcoholism," but accepted "alcohol problem." This wasn't just a piece of collaborative writing and editing - it was an integral part of the treatment process.

Open notes create a different set of problems for primary care physicians than for psychiatrists. PCPs do much more recording of findings and documentation of potential differential diagnoses. PCPs are appropriately concerned with how best to write about the numerous "rule outs" that must be thought about for symptoms that are almost certainly benign. But the challenge of how to write about uncertainties and improbable possibilities may ultimately help the medical profession deal better with uncertainty. In my own care I'd much prefer to read "I believe this headache comes from tension and does not reflect any other underlying cause - I asked him to call me next week if the symptoms persist - we could consider further testing then," rather than "to rule out a brain tumor I have referred him for a CT scan..." In this way open notes might help reduce the defensive medicine and overuse of resources that are so rampant in medical practice today.

This is a research project very worth following. Hats off to the Robert Wood Johnson Foundation for recognizing the potential value in a disciplined study of the domain!