Who remembers that classic Seinfeld episode in which Elaine is sitting in her doctor's office waiting, and she peeks into the medical file left nearby and sees the word "Difficult" written in the notes about her? Of course, that created a whole chain reaction of awkwardness and tension between Elaine and every other doctor going forward.
I'll be honest: that scene shaped my view of how most of my endocrinologists probably made notes about me, and it likely caused me to have an aversion to the idea of seeing my own medical file for the better part of the past 30 years. I've not traditionally been very physician-friendly, and for the most part, I view my visits as a necessary evil to check my "diabetes management" box and get prescriptions filled.
So the idea of scoping out my medical file to see specifically what kind of notes my doctor makes about me and my diabetes has not been a priority of mine. Sure, I've wondered about it from time to time. But it wasn't until this month's DSMA Blog Carnival prompt that I decided it was time to take a look:
Do you request a copy of your medical notes? If so, how often? If not, why?
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Yep, that is the question this month, and it started me wondering what my current endo has observed about me. And whether or not I want or need to see that information, it also begs the big question: Will my doctor even give me access to his notes?!
With the whole "ePatient Revolution" thing going on, this is a topic that's been getting more press and attention in the past few years -- especially with all the recent chatter about Electronic Health Records and the pressure on doctors to use new e-formats for record-keeping and data-sharing.
You may or may not have heard about the whole OpenNotes movement, a national initiative funded by the Robert Wood Johnson Foundation aiming to give patients access to the visit notes written by their doctors, nurses, or other clinicians -- i.e. "working to give patients access to read things they normally would not be invited to read."
The movement is run by a diverse team of doctors and nurses, has expanded to hundreds of doctors' offices and hospitals, and has grown to include about 3 million people since starting up in 2010. The goal really is to make the idea of a doctor-patient partnership "more than talk." Amen to that!
Here's a 5-minute video that explains the whole thing:
A recent NPR story on OpenNotes also explores the fact that doctors often resist sharing their notes with patients based on fears that it would lead to misunderstanding, time-wasting and even potential liability for physicians and clinics. Not so, the research shows...
After the first year, the results were striking: 80% of patients who saw their records reported better understanding of their medical condition and said they were in better control of their health. Two-thirds reported that they were better at sticking with their prescriptions. Ninety-nine percent of the patients wanted OpenNotes to continue, and no doctor withdrew from the pilot. Instead, they shared anecdotes like mine. When patients see their records, there's more trust and more accuracy.
A recent multi-media MedScape report had some intriguing data on this topic, too:
Note how more patients than doctors think doctors should share their notes, and three times as many doctors as patients seem to believe they should only share those notes deemed "appropriate." Huh?
In My World
The OpenNotes project seems to make a pretty strong case that this kind of transparency is good for patients overall; it's even referred to as "new medicine with clear benefits" because it can help patients better remember doctor's instructions, and get an overview of their own progress over time.
So yes, I decided maybe it'd be worth checking out my own endo's notes to see if I could gain any insights.
Although the office staff at my new endo's office seemed a little suspicious and reluctant to grant me access at first, they got passed that pretty quickly and told me over the phone that it wouldn't be a problem to see my medical file, as long as the doctor is present when I do so (will he be reading over my shoulder?). Since my doctor happens to be on vacation for a whole month at present, I've not had the chance to go in to review those notes yet, but am definitely planning to do that soon.
After three decades of living with diabetes and never seeing a single doctor's note, it's a new train of thought for me... but I definitely agree that it's a benefit to have this access. I want to have an open and honest relationship with my doctor. I want to know if he feels I am being difficult or non-responsive to what is being said, or whether the notes for any particular visit are more negative or positive. Plus it will save me the trouble of trying to remember on my own everything we discussed, including specific tweaks to my D-management.
I realize that there may be some medical lingo in the notes that I can't decipher, but for the most part, I want my endo to speak in a language that I understand -- and sharing the notes could help me help him to do that better.
So, while I haven't seen run screaming to my endo's office to see my notes asap, and I've never ever felt the need to swipe my medical file like Elaine did in Seinfeld, I am going to make more of an effort to be aware of what's being written. As a patient, I think that's my right and responsibility in being an equal part of my care team and empowering myself to be in charge of my health.
This post is our September entry in the DSMA Blog Carnival. If you'd like to participate too, you can get all the information here.