Friday, June 19, 2009

Open notes

Please read this story in the Boston Globe by Liz Kowalczyk about a grant our folks just received from the Robert Wood Johnson Foundation to test out the proposition that patients should have access to all of their doctors' notes about them.


Anonymous said...

Before the Freedom of Information Act in the UK, in really old sets of notes it was not uncommon for comments like "barking mad" or "batty" etc to be found in notes.

Times have changed, and some thoughts are no longer documented.

Anonymous said...

Well, I'm glad this study is going to provide some evidence, because I too have reservations. I hope the patients are carefully selected (e.g. some with serious diseases are included, not just "fluff"). The danger in my mind is that the dr. begins to leave out things like "r/o neoplasm" knowing the patient will see it, and then this thought gets lost by the next visit. This has potential for patient harm.
Also, think about how the airliner crew with the dead pilot handled the situation, not telling the passengers. Did the passengers really need to know this had happened, when competent replacement had already taken over?

I think everyone's paranoid need to know everything sometimes does not serve them well.

nonlocal MD

Tonya said...

There's a big difference between an airplane whose pilot had died and my medical record. In the first case, there is nothing I can do, so telling me will only cause me to worry. In the second case, there is a lot I can do with that information. I can make sure that I follow up on everything that my doctor had intended me to follow up on. I can be reminded of what I was verbally told but perhaps was not emotionally ready in that moment to comprehend. And, I can ask a follow up question if there's something there that I don't understand. If you're putting something in my note that you're not comfortable with my seeing, then I'm not comfortable with you being my doctor.

e-Patient Dave said...

I don't consider it practical to insist that there be no such thing as a private note.

I certainly agree that in the vast majority of cases we ought to be able to see all our doctors' notes about our conditions. But at the same time, I think it's crazy to effectively prevent a doctor from inserting a note about a condition or symptom that the patient vehemently denies. What if the next professional to read a file is not the same doctor? What, then, about the undocumented observation?

I suppose we could argue that if a patient wants to strike information from his/her record that could be lifesaving, that's his/her responsibility - somewhat like someone who declines to ever change the oil in their car.

One of the docs in the back room on pointed out that this is a special concern in psychiatric cases, and I can see it in other cases too. Long ago I knew a pregnant young woman whose statements didn't match the evidence; the nurse settled on "uterus size *consistent with* 10 week pregnancy," while making clear that she wasn't saying the patient WAS 10 weeks pregnant.

And I wonder what we'll think, a generation from now, about the "people can't handle it" issue regarding tests to rule out stuff. A couple of generations ago girls supposedly "couldn't handle" knowing about their parts "down there," and who ever would have thought back then that you could walk into a drugstore and buy a condom and a pregnancy test right off an open shelf?

I imagine there have been similar shifts in what we can and can't "handle." One necessary step in becoming participatory is that you get to see all that stuff that the pro's used to see. It may start out with "Eeewww," but then we get over it. (It happened to me the first time I changed a diaper.)

My family and I loved it when one of my early radiology reports said my bowel was "grossly unremarkable."

Anyway, all those "I wonders" are why I'm glad this experiment is starting. Needless to say, I'm hoping my doctor is one of the participants!

Jim Conway said...

Thanks for doing this study. I have been a proud user of PatientSite since the beginning beta days, checking lab values, sending emails, ordering refills, and more. Access to "my" info can also be startling. I remember once reading an MRI report from a study I had and being depressed by the "flattening," "narrowing," "demineralization," and more. I was falling apart. In speaking to my clinician, I said "too bad about the MRI report." He in return said "for a person of your age, it's really good!" Even those of us very close to health care need to position ourselves and be positioned for effective use of these essential tools in the partnership called healthcare. In addition to understanding the pluses and minuses of what we say, I hope this study can inform optimizing effective use for all.

Jim Conway

Engineer on Medicare said...

I used to receive lab reports from my primary physician's office with check marks in the normal column and occasionally a comment to the effect that something that didn't qualify for the "normal" check mark wasn't really a problem. It took about 4 cycles of calling his office to get a report with all of the numbers before it became routine for me to get all of the numbers the first time.

There is no good reason that a non-psychiatric patient shouldn't be able to see the physician's notes.