Patients Want Open Charts But Many Doctors Don't

[Sangye]

This is a pretty interesting article. I've copied it below in case the link expires.
Patients Want To Read Doctors' Notes, But Many Doctors Balk : Shots - Health Blog : NPR

Doctors write about their patients all the time, in notes detailing office visits and treatments. But for patients, those notes are a closed book.

Maybe the doctor has scribbled that the patient was "difficult," as Elaine discovered when she peeked at her chart in a memorable Seinfeld episode. When her dermatologist saw her snooping, he grabbed the chart out of her hands.

Well, patients seem ready to take that risk. When asked if they'd like to see their doctors' notes, patients in two new studies overwhelmingly say yes. But doctors aren't nearly as enthusiastic.

The idea of opening up doctor's notes has been around for decades. Advocates figure that patient oversight will reduce medical errors and help patients be more engaged. Patients have a legal right to see their records. But actually getting those notes can be expensive and slow.

Doctors and hospitals can charge whatever they want for photocopying, and can take up to two months to deliver. (Patient advocate Regina Holliday was charged 73 cents a page when she asked for copies of her husband's chart when he was dying of cancer.)

Now that doctors and hospitals are using electronic medical records, however, the process of sharing should be relatively cheap and convenient. These two surveys asked doctors and patients if they are ready to make that leap.

The first survey asked 18,741 patients of the Department of Veterans Affairs health system if they'd like to share their online personal health record with family members or other doctors. Seventy-nine percent said they would. The patients were almost all men over age 50. Many were in poor health. (Some personal health records include doctor's notes; many do not.)

But it's the second survey that really gets at the conflict over control of the medical record. It's a poll taken at the very start of OpenNotes, a yearlong experiment that aimed to measure benefits and problems when doctors let patients read their notes. (OpenNotes is funded by the Robert Wood Johnson Foundation, which also is an underwriter of NPR.) Both studies were published in the Annals of Internal Medicine.

The patients overwhelming thought that open visit notes were a great idea. They said it would give them more control and be better prepared for appointments. They also said it would help them do a better job following doctors' orders. More than 37,000 patients took part in the survey, and 92 to 97 percent endorsed access. That's a lot of enthusiasm.

One notable survey participants is "e-Patient Dave" DeBronkart, who became a passionate advocate for open access after being treated for cancer. "My view is, of course I should be able to see my records: whose data is it, anyway?" DeBronkart wrote at the start of the study in June 2010.

The doctors, however, aren't so sure. Most thought the patients would be more confused and worried if they saw their notes. The doctors also thought they'd have to work more as a result.

About one-third of the 173 doctors polled decided not to take part in the OpenNotes project. For them, the prospect of patients peering over their shoulders meant they would have to be less candid, particularly when writing about such touchy subjects as cancer, obesity, substance abuse and mental health. And unlike the doctors who signed on to the experiment, they didn't think all this hassle would make patient care better or safer.

So, will open notes be a big headache with no real benefit, or a way for patients to finally have a window into their doctors' thinking? The data from OpenNotes is due to be released next year and it should help shed some light.

But for now, here's a clue. In May 2009, the University of Texas M.D. Anderson Cancer Center started letting patients read their electronic medical records online. More than 84 percent of current patients have looked at their records. Referring physicians are using them, too. The two most common requests they make are that doctors fix something written down incorrectly, and for how best to translate medical jargon.

"As a result, they are more informed about their care plan and diagnostic results and ask smarter, more focused questions," Thomas Feeley, vice president of medical operations at M.D. Anderson, and Kenneth Shine, executive vice chancellor for health affairs at the University of Texas system, wrote in an accompanying editorial in Annals. And yes, the doctors do complain about the time it takes to explain what they wrote. But all and all, they're happy with it.

[Dirty Don]

FYI: head of my WG team sends me her notes once every 4-6 weeks...in medicalese and lay terms...really helps me remember and understand more. So, yes, get your notes, they are about YOU!! Therefore, they are yours, not necessarily by law, but by moral and ethical choice...go get'em...understand them, use them...Happy New Year all!!!

[Al]

This is an interesting story, and speaks to what most of us feel: 1) The records reflect our personal data, so why shouldn't we be allowed, and even encouraged to see it? And 2) informed patients are better patients.

Al

[Trudy]

I can see both sides. I would like all the info I can get. On the other hand if a comment by the doctor bothered me, I might not have as good a relationship as possible with that doctor. I do feel doctors might be more guarded and not record all their observations. I do not think it would be beneficial in the area of mental health.

[pberggren1]

My doc makes all his notes right in front of while I'm there. I am sure he makes other notes when he has to open my file to do other things. I can look through my file at any time. He always asks me if I want copies of stuff. We have a very good relationship.

[Sangye]

I once discovered a highly inappropriate, lengthy comment written by one of my docs. I had been kept waiting 3 hours for a first time appointment with him without a single person offering explanation or even acknowledgment that I was there. I asked but was (seriously) shouted at for approaching the nurse's desk. It was nearly 5:00 and I honestly thought they had forgotten about me. I was extremely weak back then and having to sit in an armless chair in a cold room had me reduced to a puddle. When the doctor came in I told him what had happened and was quite angry as I spoke. He listened, then blinked, then proceeded to start the appointment as if I hadn't said anything!

We actually had a nice conversation and good rapport for many visits. Nearly a year later I got my notes and saw that he had written a very long diatribe about that first appointment without mentioning anything about what precipitated my anger. He made all kinds of personal remarks about me-- a giant no-no for physicians-- and labeled me in ways that sting to this day. I couldn't believe it was the same guy. I didn't have the guts to get my notes from follow-up visits. I didn't want to see what else he had written while I was trusting of him. After gathering my courage over a few months, I was finally ready to confront him about it when I learned he was leaving the facility. I never saw him again.

I'm a firm believer in reading a doctor's notes. I know other docs at the facility read his and it tainted how they viewed me. At least I knew it and was able to have my say.

[Al]

I once discovered a highly inappropriate, lengthy comment written by one of my docs....I'm a firm believer in reading a doctor's notes. I know other docs at the facility read his and it tainted how they viewed me. At least I knew it and was able to have my say.

Sangye, this is quite the anecdote. I hope the offending doctor had the opportunity to read your notes!

Al

[drz]

I can see both sides. I would like all the info I can get. On the other hand if a comment by the doctor bothered me, I might not have as good a relationship as possible with that doctor. I do feel doctors might be more guarded and not record all their observations. I do not think it would be beneficial in the area of mental health.

The laws in our state are clear that mental health patients also have the right to see their records unless the treating psychiatrist documents why they think it would be harmful to the patient to read their record. This also has to be reviewed and justified again on a regular basis. These laws do tend to influence what staff and doctors write but generally they do a better job recording what they observe and documenting the rationale for any opinions and recommendations.

I think it good to review your records periodically cause sometimes there are errors in what gets recorded, often a typo and doctors don't proof read their dictation very closely, so reading them helps keep them more accurate.

[drz]

My doc makes all his notes right in front of while I'm there. I am sure he makes other notes when he has to open my file to do other things. I can look through my file at any time. He always asks me if I want copies of stuff. We have a very good relationship.

I have sometimes been in the room when doctor dictate notes from my session with him but usually they do this later when I am not around. Usually they will send me a copy of any report they send to another medical provider as insurance since they often seem to get lost in mail or misfiled which defeats the purpose of the whole consultation process.

[Al]

The laws in our state are clear that mental health patients also have the right to see their records unless the treating psychiatrist documents why they think it would be harmful to the patient to read their record. This also has to be reviewed and justified again on a regular basis. These laws do tend to influence what staff and doctors write but generally they do a better job recording what they observe and documenting the rationale for any opinions and recommendations....

Another issue, or maybe the same one: I do think knowledge of open records does make the reporter (your doc) more careful and accurate. I remember my mother talking about comments in the teachers' lounge about this student or that student. She would just walk away. The problem is that you get unduly influenced by the personal observations of someone else, prejudicing your own feelings.

Al