Conversation Continues Around OpenNotes - Let the Researchers Know What You Think

Jul 27, 2010, 12:34 PM, Posted by

A week after the Annals of Internal Medicine published a Perspective Paper on OpenNotes, the Pioneer-supported project is continuing to generate a robust discussion online. Notably, The New York Time’s “Doctor and Patient” columnist Dr. Pauline Chen’s piece, “Should Patients Read the Doctor’s Notes,” has catalyzed a thought-provoking discussion on the Times’ Well blog.

Although there were more than 100 comments the last time we checked, most of the debate focuses on a single theme that matches the same concerns raised in the Annals paper – the patient’s “right” to access their information vs. the doctor’s “right” to determine what information is appropriate for their patients to receive. Each “side” has a variety of reasons behind their stance, from the desire to verify the accuracy of what’s included in their medical records on the patient-advocacy side of the house, to the fear voiced by numerous doctors that sharing notes will unnecessarily worry or confuse patients not well-versed in medical jargon.

While most comments are in favor of providing access – with a few adamantly opposed to the idea – there were also those who clearly grappled with both sides of the issue.

One commenter supported the concept begrudgingly, suggesting that providing access to medical records “isn’t what patients really want;” they want doctors who “make them feel heard” and access to their records is just something that will have to do for now. One doctor, who was willing to share his notes with his patients, suggested electronic medical records — with their drop down menus and limited space to tell the “story” — have made doctors’ notes less valuable to the patient.

Another doctor summed up his perspective with the comment, “Geez, this is not easy stuff.”

“The patient is your client and entitled to your thoughts and insights. But you are also a detective, and the patient is in some sense your “perp.” There are things in the medical record which patients may not understand, and things which if they understand them they make not like. But morally and legally I think you have to come down on the side of the patient’s right to know.”

These comments demonstrate just how complex of an issue the seemingly simple act of sharing visit notes really is. That is why researchers are looking to generate as much feedback as possible, as it will help them address all the pertinent questions when the study’s results are ready to be analyzed. If you haven’t weighed-in with your opinion already, there’s still time to get involved in the conversation and let the researchers know what you think by taking the Annals Physicians OpenNotes Perspective Survey.


This commentary originally appeared on the RWJF Pioneering Ideas blog.