The Results Are In: Recent OpenNotes Research Has Made Me a Believer

When I first started covering health IT three years ago, one of the things that interested me most was the OpenNotes movement, originally a 12-month pilot initiative which brought together 105 primary care doctors across three leading healthcare organizations—and more than 19,000 of their patients—to evaluate the impact on both patients and physicians of sharing doctors’ notes after each patient encounter.

The reason this program fascinated me so much was because I wasn’t sure how I felt about it. On one hand, I knew that healthcare needed to be more patient-centric, and allowing patients to read their notes certainly should increase their understanding of their health, thus enabling more control. It would be hard to deny that. On the other hand, valid questions arise when you open this door, such as, will doctors be as candid with their notes and are all patients with all conditions ready for this kind of responsibility and control? These concerns, too, would be hard to deny, even for OpenNotes’ biggest supporters.

Personally, one-sided debates with slam-dunk conclusions don’t fascinate me as much as arguments that have valid points on both sides. I even blogged about OpenNotes in 2013, unsure which side I was on. As such, I have closely followed this initiative for the last three years looking for research and evidence to sway me towards one side or the other.

Well, we’re closing in on the end of 2015 now, and I can safely say that I have been swayed: I’m a believer. The OpenNotes movement began at Boston’s Beth Israel Deaconess Medical Center (BIDMC), Danville, Penn.-based Geisinger Health System, and Seattle-based Harborview Medical Center. The initial feedback was that patients reported feeling more in control of their health, being better prepared for their visits, and several other benefits. What’s more, doctors saw little or no impact on their workflows. At the end of the 12 months, 99 percent of patients wanted to continue sharing visit notes and no doctor asked for the notes to be turned off.

However, the skeptic in me still wanted to see more. As more organizations got involved, would doctors start to feel that their jobs were becoming tougher, having to answer too many questions during off hours? Would working as a team improve care and patient safety, or would it put physicians “on the hook” for more than they would normally like? Two pieces of recent research, from two of the three initial participating organizations, point to these concerns being more paranoia than reality.

First, research from BIDMC, published in the August edition of The Joint Commission Journal on Quality and Patient Safety, has suggested that that this kind of patient engagement has the power to improve safety and quality of care. The researchers came to these conclusions from five years of experience with OpenNotes, new survey data, and focus groups to examine key areas of patient safety and quality of care that might be impacted by more open communication between doctors and patients.

"What we heard from patients and doctors fell into recognizable categories—for example, catching medication errors, better remembering next steps and improved plan adherence, enhanced error reporting, improved coordination of care for informal caregivers of vulnerable patients with many providers and appointments, and reduced diagnostic delay. In many common safety categories, it appears that having the patient's or an informal caregiver's eyes on clinical notes can help ensure care is safer. Doctors review hundreds or thousands of charts; patients review one: their own," said lead author Sigall Bell, M.D., in the Division of General Medicine and Primary Care and Assistant Professor of Medicine at Harvard Medical School. "OpenNotes may have a unique role in connecting patients and clinicians in the space between visits."

Patients said, among other things, that their doctors' notes helped them remember to take their medications better and recall more of what happened during office visits. Some noticed errors in their records that were subsequently corrected. Others read the notes and were reminded to follow up on clinically significant appointments. "The message that we are getting from many patients is that they want to participate in their care. And while the responsibility for patient safety still rests primarily with healthcare organizations, this research shows us what's possible when we make space at the table for patients."

Similarly, even more recent research from Geisinger, appearing in the Journal of Medical Internet Research, found that patient access via a web portal to their doctors' notes is associated with improved adherence to a medication regimen. Specifically, among patients with access to notes from their primary care doctor, 79.7 percent were adherent to antihypertensive medications in contrast to only 75.3 percent of controls. Geisinger researchers analyzed data from 2,147 adult patients who took at least one blood pressure or cholesterol medication from March 2009 to June 2011.

"Providing patients access to their doctors' notes and reminding them to read them before visiting their doctor is key to reinforcing the doctors' rationale for prescribing specific medications and dosage," explained Eric A. Wright, Pharm.D., a research investigator at Geisinger's Center for Health Research and the study's lead investigator. "We demonstrated that encouraging patients to utilize a web portal to view their doctors' notes is a cost effective and efficient way to influence medication-taking behavior. Based on this study and our prior OpenNotes reports, increasing patient access to fully transparent doctors' notes should be on the radar screen of all healthcare providers," he added.

It should be noted that some doctors also expressed concerns, particularly in the BIDMC research. They wondered if note writing would become more vague knowing that patients would be reading the notes. The doctors also worried about how patients would define mistakes, how patients would report errors and ultimately, how that process might impact trust. That being said, one doctor reported, "I felt like my care was safer, as I knew the patients would be able to update me if I didn't get it right."

So while not all concerns are alleviated (when are they ever?), this movement has taken considerable steps in a positive direction. You will never get all providers on board, but that is an unrealistic goal anyway. More research is still on the way, as well— Harvard Medical School’s Bell and colleagues are using this preliminary research to guide work on a two-year study—The OpenNotes Patient Safety Initiative—funded by CRICO, a hospital insurance provider. The initiative will further examine the impact of note sharing on patient safety, medical errors and communication with the goal of further developing and refining an online reporting tool for patients to provide feedback on their notes.

With the momentum that this program now has, I would be shocked if this upcoming research reports anything other than positive feedback. Indeed, now, in the five years since the launch of the study, the number of patients who are able to read their visit notes has grown to more than five million nationwide. It might have taken me three years, but OpenNotes, you now have me sold.

Are you sold on the OpenNotes movement? Feel free to comment below or follow me follow me on Twitter @RajivLeventhal.