OpenNotes: Of course patients should have ready access to their medical record

Oct 7, 2012 13:02 EDT

Has this happened­ to you?

You saw the patient last week. The visit went well. You explained things vigorously. Now you get this message from the patient:

"I don't want to take the blood thinner; why I am taking a blood thinner?"

Or this scenario:

The patient you saw last week tells his doctor: "Dr Mandrola said I wasn't a candidate for ablation." But a review of your note says: "We discussed ablation, but at this time symptoms had resolved and we agreed that ablation was not the best strategy. However, if symptoms were to recur or worsen, ablation would be an excellent strategy."

In electrophysiology, and cardiology, it's essential that our patients be fully informed. Knowledge empowers patients to share in important medical decisions. Considering the aggressive nature of heart-rhythm therapy, such shared decisions should be the only kind. Think about the things we do to treat arrhythmia, which is rarely life-threatening today or tomorrow: we burn (create scar in) the heart or install shocking devices. These are serious interventions that come with burdens as well as benefits.

I often use letter grades to explain this concept to patients: "Your overall health now—say with atrial fibrillation—is a C. Getting rid of AF may improve you to a B+, but in the process, there is a risk of going down to a D or F."

No matter how hard I try to explain the issue of balancing the risk of treatment vs the risk of the disease, few patients leave the office ready for a pop quiz. Whiteboards notwithstanding, there's just not enough time for repetition. The spoken word isn't that sticky. Patients need more information—say, a handout or a study guide.

This is where physician researchers from the department of internal medicine at Harvard University gave clinicians a great gift last week.

OpenNotes is an initiative to give patients easy access to their medical records. What better study guide could there be than a record of the doctor-patient encounter?

I realize this is a really disruptive idea. Patients rarely look at their charts; and even if they did, it would be hard to decipher the medical gobbledygook.

But all this may change. A new study challenges the old thinking that patients who read their own chart wouldn't understand it, be confused and anxious by it, and then inundate the doctor with off-topic questions.

Here's the study (from the Annals of Internal Medicine):

Teaming up with a group of like-minded primary care doctors from Philadelphia and Seattle (105 doctors total) and 13 564 patients, the OpenNotes group set out to test three ideas:

• Patients would read the notes and the information would improve care.
• Doctors' workflow would not be adversely affected.
• It would be so nifty a change that at the end of a year, patients and doctors would continue to participate.

 

Findings

Yes, you guessed it: the increased transparency of OpenNotes worked beautifully.

Informed patients reported an "increased sense of control, greater understanding of their medical issues, improved recall of their plans for care, and better preparation for future visits." Remarkably, two-thirds of patients felt that access to their note would lead to better adherence to medications. Contrary to what some doctors would have predicted (including this one), only a small percentage of patients reported being worried, confused, or offended by what they read.

Equally happy were the doctors. Fears that OpenNotes would lead to longer notes, more questions, and decreased efficiency were not realized. The explanation for this pleasant finding was not clear. Perhaps these were savvy patients respectful of the doctors' time? Perhaps doctors that volunteered for this initiative were good documenters? Just as speculative, but enticing nonetheless, was the notion that for every patient with added questions there was one that had their questions answered.

Thoughts

Writing in clear understandable language and then offering this to patients is a great idea. As far as I am concerned, OpenNotes can't get to electrophysiology fast enough. Think of the examples: An AF patient (and her concerned family—who may not have made the office visit) can now read that the reason why we recommend exposure to an anticoagulant is because the CHA₂DS₂-VASc score is off the charts. A better example: How many patients have you seen that recall the nuances of having an implantable cardioverter defibrillator (ICD) after just one office visit? With an OpenNote platform, a doctor can craft a note explaining the logic of putting in a primary-prevention ICD—a device that may indeed (hopefully) be useless to that patient. How is this a bad idea?

Without doubt, OpenNotes will need tweaking when it's tried outside of places like Seattle, Philadelphia, and Boston. One way to improve it: Let patients input their demographic data—either through portals in the office, online beforehand, or, maybe in the future, with a thumbdrive or download from a cloud. This will take care of many of the inaccuracies that are often carried on in the medical record. Let the demographic part of the chart stay electronically sterilized. Focus most of the effort on the impression and plan, as this is where the learning and action occurs.

Full disclosure: As a doctor with a blog, I clearly harbor conflicts of interest. Of course I think well-written and accurate information is a critical component of quality medical care. Consider me a fan of words.

So yes, I'm really excited about this idea. Patients empowered by knowledge are more likely to help themselves and choose wisely. But it would be a mistake to think of this new paradigm as good only for patients. OpenNotes also empowers doctors. It allows us another way to express ourselves with the patient. We can put in words the importance of lifestyle changes, of adherence to medical regimens, and of the benefits and risks of their treatment choices. We can teach with our written words.

Then, perhaps the chart will be more than just an invoice for services rendered.

JMM

References

Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors' notes: A quasi-experimental study and a look ahead. Ann Intern Med 2012: 15;461-470.

Goldzweig CL. Pushing the envelope of electronic patient portals to engage patients in their care. Ann Intern Med 2012; 157: 525-526 .

Meltsner M. A patient's view of OpenNotes. Ann Intern Med 2012; 157: 523-524.