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« Judging Others | Main | The OpenNotes Project - Why Do We Need It? »

August 09, 2010

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Coker

I've been giving this question a lot of thought, and I'm still tremendously torn. I worry that doctors wouldn't be 100% forthcoming in their notes if they knew they would be viewed by the patient (imagine notes about scents, body marks, genitalia, and behavior).

At the same time, it could be valuable for a patient to see what their doctor recorded, and this could expedite second opinions or doctor transfer. Open notes could be really useful in preventative care. It would be good to allow patients to track their weight, cholesterol, or oxygen intake.

But I think the risks outweigh the benefits.

I think doctors might start keeping two sets of notes, one for the patient and perhaps a supplementary set with information the doctor wanted to keep to themselves. Or, doctors might fail to note an outside possibility because they don't want to scare the patient. These behaviors, which would be inevitable, would be detrimental to future health goals.

Wendy Harpham, M.D.

Dear Commentor Coker,
These are all valuable points, many of which I've been struggling with also.

Today I am ambivalent. In fact, one of the reasons I decided to invest in this series of blog posts was to use the postings and the comments to help me work my way through to an opinion on the matter.

I look forward to your thoughts on my next few blog posts.

With hope of better understanding, Wendy

Finn

I've read the notes in my charts (though not recently) & like having access to them, which state law has given me for many years. I understand the concern people have about doctors censoring themselves if they know their patients are going to read the charts. However, if I were enrolled in such a project, I think I have collaborative enough relationships with my internist, gynecologic oncologist, and cardiologist to ask them not to censor themselves, and I think they'd agree. When I was still in chemo, I asked my nurse a question about dose or something and she just handed me my chart so I could look it up myself. Fascinating reading, my ovarian cancer chart; I paged through it for more than an hour while chemo dripped into my arm.

Of course, I'm probably not the typical patient, either. As a medical editor and someone who's worked in health care and public health for decades, I can actually understand most of what's in my chart without translation. I'm honest with my doctors and they know that I do my own research but value their expertise more highly than what I read. I've had some scary diagnoses (like cancer) and some lengthy workups for other scary possibilities (like ALS), so they know I don't panic over possibilities.

But, as I say, I don't think my relationships with my doctors is typical, so while I think open notes would work very well for me, I have my doubts about it as an across-the-board policy. Perhaps it would make more sense for doctors to have a flexible system that allows them to match the kind and complexity of information available to each patient's level of understanding and desire. My mother, for example, would not be interested in seeing her chart at all, while one of my sisters might be interested but would need a plain-English version and probably only want info like dates of immunizations, exams, and significant illnesses, along with test results and interpretations.

So, I think "Do you want to see your doctor's notes" is too black-&-white a question. Maybe something along the lines of "What information do you want to see, and how much explanation of it do you want?" might be a better approach.

Of course I don't know where anyone in patient care is going to find the time to ask that question or respond accordingly, since no one is going to pay for it.

Wendy Harpham, M.D.

Dear Finn,

Thanks for sharing your useful perspective and insights. Your comment foreshadows some ideas I will be sharing soon.

I hope you and the other readers will bear with me as I tease apart the various aspects of the issue. My hope is that this mini-series of blog posts -- both my posts and all the readers' comments -- will help me develop an informed opinion about the controversy.

As always, my ultimate goal is to help Healthy Survivors think about the issue in healing ways.

Looking forward to my next post and the comments that follow. With hope, Wendy

sue c

My husband's cardiologist always dictates his findings after the appointment while we are sitting there. That way we make corrections and ask questions that come up. I find it very helpful. He also sends us the printed copy after it is written up.

Julie A. Meynard

Oh my. Hard call. It could be helpful. I don't know exactly what type of HD I have, so how could I self-help search for clinical trials? This info would be in my patient records, right? My onc once said my HD will kill me, but he won't ever say how or when. I currently have no "next appointment" scheduled. Should I know what's in my notes? Even if I am feeling great, should I have some advanced warning about planning for end-of-life issues?

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