There’s a movement underway in health care. Some would even call it a revolution. Patient engagement, doctor-patient communication, and shared decision-making are growing by leaps and bounds, driven largely by technology. Gone are the days when doctors scribbled private and incomprehensible notes in medical charts, inaccessible to patients. Now, the OpenNotes movement is ushering in a new era of transparency in medicine, to the benefit of doctors and patients alike.

What is OpenNotes?

Tom Delbanco, M.D., an internal medicine physician for 40 years, had an experience with a patient in the 1970s that made him rethink the way he made notes on medical charts. The patient was exhibiting signs of early alcohol abuse, but Delbanco hesitated to write that on the chart in case it wasn’t true. So he asked the patient, who confirmed the diagnosis.

That moment was a revelation for Delbanco, reports Healthcare Informatics, because “it crystallized his growing realization that his physician notes could be a source of collaboration and mutual understanding between himself and his patients, not simply a one-sided, walled-off process.”

In 2010, Delbanco – by then at Beth Israel Deaconess Medical Center in Boston — joined forces with Jan Walker, R.N., to spearhead a movement toward greater transparency in medicine, which they called OpenNotes. More than 100 primary care doctors from three medical institutions in the U.S. began sharing notes online with their patients. Each site was part of a 12-month study to explore how sharing doctors’ notes may affect health care.

The results were eye-opening. According to the medical journal BMJ Open, four out of five patients given the option to read their notes did so. Two-thirds of those patients reported “potentially important clinical benefits.” Afterwards, 99 percent wanted the practice to continue, whether or not they chose to read the notes, and 85 percent of patients indicated that access would be important for their future choice of a provider or system. “Perhaps most strikingly, at the end of the study, no doctor chose to discontinue the practice,” reports the journal.

Common concerns

Of course, patients now have a legal right to see their medical charts anyway, per the HIPAA Privacy Rule of 1996. However, the OpenNotes movement is not just about making doctors’ notes available to patients, but to involve patients in a collaborative process to ensure accuracy, empower them to be involved in their care, and encourage them to adhere to wellness or disease treatment plans.

Evidence shows that most patient charts contain errors, says Delbanco in a video about OpenNotes. “The evidence also shows that when doctors and patients are on the same page, looking at the same information, everything works out better for the patients and the clinicians.”

But many doctors have concerns about this level of transparency. For one thing, some say they write their notes for themselves and other clinicians; with medical literacy rates so low, will patients even be able to understand the notes?

Also, specialists are concerned about the challenge of addressing two “customers” – the patient and the referring primary care doctor, Benjamin Zaniello, M.D., says in Healthcare Informatics. So in addition to making their notes comprehensible to patients, “we need to provide the shorthand medical-speak that allows the referring physician to understand. And there’s absolutely some conflict there.”

Ultimately, however, Zaniello believes the shift towards greater transparency is “valid and important” for specialists. “Number one, the data in the note is about and around the patient, and the patient has the right to see it. And there should be no secrets. That is the most important thing. But the second thing is that the OpenNotes movement pushes doctors to take better notes about patient care. And in our fragmented marketplace, having better documentation will improve patient care.”

In fact, opening doctor notes has been a “non-issue,” according to providers who have gotten on board – including the Cleveland Clinic, one of the first major patient care organizations to implement OpenNotes in 2012.

Surveys show that all the key concerns—from patients overwhelming practices with phone calls to an increase in malpractice lawsuits—have turned out to be “completely groundless,” reports Healthcare Informatics. Rather, doctors experienced almost no problems, and very quickly, “note transparency simply became the new normal.”

The power to drive patient engagement

To date, 10 million patients have accessed OpenNotes, according to Delbanco. And the movement has gained plenty of fans among primary care doctors and specialists alike.

Rasu Shrestha, M.D., chief innovation officer at the UPMC integrated health system in Pittsburgh, told Healthcare Informatics, “I’m a big believer as a physician in transparency—whether it’s pricing transparency, or transparency around processes and clinical procedures, and around documentation. I believe it improves the documentation itself, patient compliance and medication adherence—and that’s where things are going. I think it’s important to make sure that patients are part of the care collaborative.”

Neurologist Allison Weathers, M.D., of Rush University Medical Center in Chicago, urges specialists to consider how valuable opening their notes to patients is for their practices: “This is one of the areas I’m really passionate about, the power that OpenNotes has to drive patient engagement.”

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