Friday, June 19, 2009

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!


Anonymous said...

Great idea. Your note writing process emphasizes the collaborative nature of decision making. Perhaps we could even get to the point where the patient co-signs the visit notes. That way, it is captured in a legal record that they understood and agreed with the decision, or if they had doubts, those would be captured. It also gets away from the "doctor as God" view that patients of the previous generations often held.

Jim Sabin said...

Dear Anonymous -

Thanks for your comment.

You understood what I meant to convey. Open notes go against mystification, secrecy and "doctor as God." I think it's a process that could have a positive impact on the outlook and attitudes of physicians. I believe it did that for me. I wouldn't want to emphasize the "legal record" aspect of having the patient sign the note, but I like the idea of going over the note together and either acknowledging agreement, or, as sometimes happens, agreeing to disagree, as can occur between the closest of friends.

Take a look at my post from December 18, 2007 - "Physician Review by Patients." I think we see things the same way!



eric said...

Hear, hear! Technology really can help the doctor-patient relationship. Sitting next to each other, working on a project (the patient's own medical record) together, learning from each other. We might not have the set-up in a hospital room, and we don't need it in every case. But it is good to have in our repertoire. Hmmm. I'm thinking that this collaborative note-writing constitutes a procedure, which could be billable in the old-fashioned health-care system that we are trying to leave behind.

Jim Sabin said...

Hi Eric -

Good to hear from you!

I agree that new technologies can often be adapted to enhance the doctor-patient relationship. I've imagined that if I were starting my career in psychiatry now I might make the incorporation of supportive IT into clinical practice an area of special interest.

Your joke about collaborative note writing as a billable procedure makes a good point. The time we take with patients isn't properly compensated. Collaboration, whether on a note or in other forms of conversation, often improves outcomes and constrains costs. But in our current reimbursement system the physician is, in effect, penalized for doing the right thing.



Judy42 said...

Good idea! One I liked as well occurred w/probably the most arrogrant, condescending, obnoxious doctor I ever encountered. (I'm delighted to see him advertising his practice on local TV - pickings must be getting slim).

My family doctor of some 20+ years had died and I was "doctor shopping". It didn't take me long into that first and only appointment to KNOW he would NOT be my doctor. However, I WAS MOST IMPRESSED that he kept a small handheld tape recorder in his coat pocket which he took out and dictated his notes into at then end of our appointment. My comments got included on the tape. Whether they got included in the transcribed notes I don't know.

BUT - I've often wished since then that I dared to ask my doctors if they minded my taping our office appointment. So often we try to cover so much in such limited time that I occasionally am not quite sure just exactly what we did agree upon. I usually manage to remember the important things or at least the most timely ones but ....

Jim Sabin said...

Dear Judy -

Thank you for your comment!

It's interesting that a doctor who you experienced as arrogant, condescending and obnoxious used his tape recorder in a way that you found to be respectful, in that he included your comments in what he dictated. Too bad that other aspects of the way he related to you didn't match his use of the recorder.

There's no reason at all not to ask a doctor about your own recording of the appointment. I only had that experience a few times in my psychiatric practice, but the reasons the patients wanted to do the recording were much like yours. It appeared to be useful to the people involved. Sometimes they reported thinking more about a topic, and sometimes I was asked "what did you mean by XYZ?"

Not every physician will be comfortable with the practice, but it's entirely reasonable to bring it up for discussion. If you do I'd love to hear how it turns out for you!



Lori said...

I really enjoyed reading your post. As someone who sees a value in collaborating with my health care providers, I would welcome the opportunity to discuss notes, or participate in their creation. I also wish that doctors were more open with sharing them; I have helped shepherd my parents through illnesses, accompanying them so that they had an advocate taking notes and focusing on what the doctor is saying. When a patient has received a serious diagnosis, often (from what I have experienced) they try to focus on what the doctor is saying but they cannot remember the entire discussion because they became distracted when they wanted to ask a question, or became confused over some component of the treatment protocol. Or, if multiple options are presented, it's sometimes hard to remember all of the "if you do this, here is the result" options.

It'd be even greater if these notes were available to put in the patient's personal health record, like the ones I created for my family in HealthVault, so that they could refer to them, much like my parents did the notes I took in the doctor's offices.

Hopefully you can write more blogs on best practices on note writing for physicians who are truly concerned about this particular element of a patient's medical record.

Jim Sabin said...

Hi Lori -

Thank you for sharing your thoughts on these issues.

I think that many doctors would be ready to involve patients in the ways you describe if the logistics were easier for them. Technology could be a big help.

In the blog world it's easy for readers to post comments and for the blogger to shape the process, as by rejecting spam. Over time, electronic medical records will be configured to allow physicians to make their notes accessible to their patients and for patients to add comments. And, exporting the notes to HealthVault would just take a click or two.

Thanks for suggesting further posts on the topic. I'll keep my eye out for advances in the area!