Will reading your doctor's notes make you healthier?

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In an old Seinfeld episode, Elaine visits her doctor  and manages to sneak a peek at the physician’s notes. She sees she’s been labeled "difficult." The doctor grabs the notes from her and after a confrontation, jots down more notes. Later, Elaine convinces Kramer to try to get access to her chart, but he walks out empty-handed only to report, "they’ve now created a chart on me."

The Health Insurance Portability and Accountability Act (HIPAA) now allows patients access to their medical records, but few patients—like Elaine--have ever lain eyes on their records. And those who try commonly face bureaucratic obstacles and exorbitant copying fees.

One doctor thought that openly inviting patients to review these records could better engage patients, and increase their understanding of health and treatment regimens. So he decided to find out for sure.

In June 2010, Dr. Tom Delbanco and a group of researchers launched a year-long open access study named OpenNotes. The study, sponsored by the Robert Wood Johnson Foundation, involves more than 100 primary care physicians and approximately 25,000 patients from three healthcare centers—the Beth Israel Deaconess Medical Center in Boston, MA, the Geisinger Health System in Danville, PA., and the Harborview Medical Center in Seattle, WA. Throughout the study, patients who have just seen their doctors receive an e-mail pointing them to a secure web site where they can view their physician’s notes. The patients will receive a second e-mail message two weeks before any scheduled return visit, reminding them that the notes from their previous visit are available for review.

"The OpenNotes project aims to improve communication and transparency between doctors and patients," says Dr. Tom Delbanco, the lead investigator of the study. "We have one simple research question: After a year, will the patients and doctors still want to continue sharing notes?"

In addition, the researchers are monitoring the impact of note sharing, including patient engagement, patient and physician reaction, quality of communication, interactions, care and outcomes, as well as doctor workload levels.

In the July 20, 2010 issue of the Annals of Internal Medicine, the OpenNotes investigators published a perspective, "OpenNotes: Doctors and Patients Signing On."

And in the spirit of open source, Annals is providing the article free on its website.

Researchers believe that inviting patients to review the records not only improves patient understanding of their health. but can help them to stick to their treatment regimens more closely, truly improving health outcomes.

But, researchers also point to potential downsides: Physicians might edit their notes, potentially compromising care. Patients may worry if their doctor speculates about serious diseases like cancer or heart disease. Doctors might experience a flood of  calls and e-mails when patients come across common medical terms or shorthand that can be taken the wrong way. For example, "SOB" refers to "shortness of breath", not a derogatory designation. And "NERD" is short for “no evidence of recurrent disease."

Dr. Delbanco suspects having access to these notes "will make patients more actively involved in their care, better educated about their illnesses, and better able to detect and prevent medical errors."

So what do you think? Should medical records be shared as interactive documents between patients and physicians? Can this new medical transparency work? Or will it unnecessarily worry patients like Elaine and overburden doctors who have to answer to even more concerns?

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Lori Mehen is an Account Manager in Brand Communications + Design at Red Hat. She grew up in Los Angeles, CA and now resides in Durham, NC with her husband and three kids. Lori enjoys water skiing, cooking and car racing.


More transparency in the medical sector would be <em>great</em>, but as with most pro vs con discussions, the golden mean is ignored as a perfectly viable compromise.

If physicians know their patients are going to read their notes, they will write differently, and in a worst case scenario they will self-censor themselves to the point that valuable information is lost. As for the patients, I can imagine some ridiculous lawsuits if they all got to read a patient log where the physician is truly honest and outspoken.

Why can't it be an option to separate the log in two? It might even make the records more readable as a whole. Imagine keeping these logs:
- 'Patient Status' as a transparent journal shared between physician and patient, which covers all the hard facts like patient history, test results, medical diagnosis and results of treatment thus far.
- 'Patient Process' as a private log on the patient's psyche, patterns under surveillance, unproven hypotheses and so forth.

What the 'Patient Process' might benefit from would be greater internal transparency. By that I mean, to mitigate bias, the log would be read by practically any medical worker involved in the case, such as the nurses, the test machine operators and so forth.

For years in my late teens and early 20s, I had doctors and nurses looking at me strangely when they glanced through my medical chart at my general practitioner's office.

One day, a new doctor grabbed the chart of a patient with the same name. As we began to talk, I realized that she couldn't be looking at the right chart. Sure enough, the birthday was wrong. She went and grabbed my correct chart and began reading from it to confirm it was mine.

Then she read the words, "<name of a relative> is very concerned that the patient is engaging in promiscuous sexual relations."

Wow. Suddenly years of funny looks from various care providers made sense. (Not to mention a really, really strange conversation with one doctor years prior.)

I was able to explain to the doctor that I was an adult in a monogamous marriage, having dated the same person since the time that note was placed in my chart, and that my relative was a paranoid religious nutcase who had been accusing me of these sorts of things for most of my preteen and teen years. (But even I never imagined she'd call my doctor or that something like this could end up in my medical chart!)

So this bizarre experience illustrates why open access to medical records is DEFINITELY a good idea. (And why teens should have more legally mandated privacy.)

If your doctor doesn't let you see their notes on you <em>without any hassle</em>, they must have something to hide and shouldn't be trusted. It's that simple.

21 years ago I was fortunate enough to find a free standing birth center that believed in open records. Not only that, we were not called patients but clients and we were responsible for doing some of our own basic tests and recording the results in our charts. It was an incredibly empowering experience! As a result, I now always ask to see my charts at any visits.

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