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Transparency: Effective Patient Engagement

October 1, 2013
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Industry leading CMIOs converged this week at the first ever Association of Medical Directors of Information Systems (AMDIS) Fall Symposium in Boston. One of the more interesting discussions at the event was centered on the usage and effectiveness of the OpenNotes initiative in engaging patients. 

The OpenNotes movement, for those who are unaware of its existence, is a simple concept that encourages providers to be more transparent and share visit notes with the patient during and after their encounter. It has been a popular topic for us at Healthcare Informatics, having been covered in the past by my colleagues David Raths and Rajiv Leventhal. After attending AMDIS' Fall Symposium, I'm beginning to see why this "movement" is generating buzz.

At the event, Bradley H. Crotty, M.D., clinical informatics investigator at the Boston-based Beth Israel Deaconess Medical Center, gave a thorough overview of a year long demonstration of OpenNotes at three different provider organizations. Dr. Crotty's colleague, Tom Delbanco, M.D., primary care doctor, is spearheading the OpenNotes initiative nationwide. Those providers from the study included Beth Israel Deaconess, the Danville, Pa.-based Geisinger Health System, and HarborView Medical Center in Seattle. The main purpose of this demonstration was to ask the ubiquitous OpenNotes question - Is it a good idea to share notes with the patient? 

It's early, but the answer is looking like the affirmative. Dr. Crotty shared the results of the study, which can be found here. Of the approximate 13,500 patients that had visit notes available, 84 percent opened at least one note at Beth Israel Deaconess, 82 percent at Geisinger, and 47 percent at HarborView. 

Up to 87 percent of the patients who did open a note and filled out a post-intervention survey said that OpenNotes put them in greater control of their care, up to 78 percent said it help increased their medication adherence, and up to 84 percent reported that it helped them better remember their plan of care. The stats say a lot, but the testimonials from the patients drove home the potential of the movement even further.

  • "Weeks after my visit, I thought, 'Wasn't I supposed to look into something?' I went online immediately. Good thing! It was a precancerous skin lesion my doctors wanted removed. I did."
  • "In his notes, my doctors called me 'mildly obese.' This prompted immediate enrollment in Weight Watchers and daily exercise. I didn't think I had gained that much weight. I'm determined to reverse that comment by my next check-up."
  • "If this had been available years ago, I would have had my breast cancer diagnosed earlier. A previous doctor wrote in my chart and marked the exact area but never informed me. This could potentiall save lives."

Of course, there were concerns from both sides, but the overall impact of patients' issues could be considered minimal. Up to 36 percent who were surveyed expressed privacy concerns, up to 8 percent expressed confusion or worry over seeing their note, and a small sliver of patients were offended by the notes. A large majority of those patients who had privacy concerns didn't let that deter them from participating in the study. In the end, 99 percent of those patients wanted OpenNotes to continue. 

From the provider's point-of-view, before the demonstration, there were concerns that they'd have to spend more time at visits, addressing patient questions, and writing/editing notes. None of those concerns really came to fruition, said Crotty, and not a single one elected to stop. Let me reiterate, not a single doctor elected to stop using OpenNotes. Do we need better proof of its effectiveness? 

It says a lot that the providers who participated in the study, Geisinger and Beth Israel Deaconess, are both expanding the initiative, and others like the Veterans Administration and Cleveland Clinic are adopting it. The excitement over this kind of engagement was palpable.The idea of finding better ways to engage and include the patient when providing care was a continuous theme throughout the AMDIS event. 

During a lively second day session, CMIOs offered various opiniwons on how the patient-doctor encounter should evolve in the digital age. One outspoken attendee essentially said OpenNotes could be the pathway to ensuring the two sides are speaking the same language. It's a way, he said, for the doctor to show the patient his documentation and say, "Here's what I heard from you -- you tell me if that's right."  

Various providers, including Crotty during his presentation, talked about social media, and its role in engaging patients. While the potential for social media may be great, the question of its effectiveness in the same capacity as OpenNotes is still up for debate. I digress, however, since that is a topic that could occupy an entirely different blog.

What's clear is that OpenNotes has the potential to change that patient-doctor discussion. Sure, there are still questions over how OpenNotes could be used in different specialties and perhaps in pediatric care, but with one million participants and counting, and an additional $2.1 million investment from the Robert Wood Johnson Foundation, it's going nowhere. That is a good thing.