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OpenNotes: Bonus or Burden?

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OpenNotes: Bonus or Burden?

OpenNotes: Bonus or Burden?

Date: 09/01/2016

Although some physicians initially balk at the idea, sharing exam notes with patients is a growing trend, and the practice has been endorsed by the American College of Physicians. More than 8 million patients in the U.S. now have access to their clinicians’ notes, including some at Johns Hopkins via the OpenNotes function in MyChart.

It all started in 2010 when Beth Israel Deaconess Medical Center, Geisinger Health System and Harborview Medical Center, a safety net hospital in Seattle affiliated with the University of Washington Medical School, participated in a demonstration study in which patients were given access to their doctors’ notes. Since that time, Mayo Clinic, Cleveland Clinic and Dartmouth-Hitchcock Medical Center have adopted the practice, among a host of other institutions.

Why share notes? Studies demonstrate that reading clinicians’ notes helps patients and their caregivers remember important information from the office visit, improves health literacy and increases patients’ engagement in their care. Engaged patients are more motivated to follow their care plan, and they have higher rates of medication adherence.

Open access to their notes also gives patients the opportunity to address physicians’ mistakes, says Howard Levy, an internist who is co-chair of the Patient- and Family-Centered Design Team and the lead physician champion of OpenNotes at Johns Hopkins Medicine. “A patient of mine noticed that I’d written in my note that one of her medications was discontinued, but it was something she needed to take. Transparent notes help patients take a more proactive role in their care.”

At Johns Hopkins, one department that has adopted OpenNotes is Neurosurgery. Says Henry Brem, its director: “Better-informed patients have better medical experiences and make for better outcomes. We think it’s a great advance for patients to have full access to the notes that relate to them.” Several clinics offer OpenNotes, including Green Spring Station General Internal Medicine, Johns Hopkins Outpatient Center Audiology and the Comprehensive Care Practice at Johns Hopkins Bayview Medical Center. In total, Levy says that some 150 Johns Hopkins Medicine providers offer OpenNotes.

Clarity at a Time of Confusion

Internist and patient- and family-centered care researcher Lisa Cooper, vice president for health care equity for Johns Hopkins Medicine, recently joined the OpenNotes board on the invitation of Tom Delbanco, the founder of OpenNotes and a longtime advocate for patient- and family-centered care. A recent personal experience reinforced her professional commitment to open-access clinician notes. When a family member required care, knowing the treatment rationale and options, the names of tests and medications, and the dates, times and locations of services allowed her and her family to advocate for him. “We could ask questions we needed to ask, speak up about our needs and preferences, and make sure we got what we needed from the right people and at a time and place that fit our values, resources and lifestyle.”

Cooper adds: “Dealing with an illness without those kinds of resources is like being in a foreign country, unable to understand the language or navigate the roads to your destination. OpenNotes can provide a detailed guidebook for patients and families.”

Podge Reed, who received a double lung transplant at The Johns Hopkins Hospital in 2013 and is a member of the hospital’s Patient and Family Advisory Council, says, “When a diagnosis is critical, patients and families can go blank, and they just don’t take in everything the doctor is saying. Being able to go back and review the physician’s instructions can help the patient feel more in control at a frightening time.”

What the Data Show

In the 2010 demonstration study, 105 physicians from Beth Israel Deaconess Medical Center, Geisinger Health System and Harborview Medical Center in Seattle offered some 19,000 patients access to their notes. More than 80 percent of patients opted to read their notes and, after a year, 99 percent wished to continue to do so. Of those who read their notes, more than 85 percent said that the availability of OpenNotes would influence their choice of providers in the future.

In that study and others, patients reported many benefits from reading their notes, including:

  • Greater understanding of their medical condition
  • Enhanced trust in their physician
  • Feeling more in control of their care
  • Better compliance with the care plan and better medication adherence
  • The ability to share information with family members and caregivers
  • The convenience of being able to jog their memory of the visit and the provider’s instructions
  • Improved care coordination

Downsides?

Some physicians question whether transparency is the best policy when it comes to notes that involve medical terms like “morbidly obese,” which have negative connotations to the layperson, or with psychiatric diagnoses in which the patient’s own condition might make keeping perspective on the notes difficult.

In fact, says Levy, patients already have access to their diagnoses in MyChart, although Epic allows providers to uncheck a box in the Problem List if they do not want that specific diagnosis shared with the patient. The same can be done with exam notes. “If the clinician judges that sharing would cause more harm than good, then it is appropriate to withhold certain notes or certain specific encounter information. Epic allows clinicians to do that,” he says.

Already overburdened physicians fear that making their notes accessible to patients will add to their workload. In the demonstration study, only 3 percent of physicians reported spending more time outside of visits answering patients’ questions and email volume didn’t change.

About 20 percent said that the way they wrote about cancer, behavioral health, substance abuse or obesity changed, and 11 percent reported taking more time writing and editing their notes. However, at the end of the study period, all the participating physicians opted to continue making their notes accessible to patients.

Supporting Self-Care

In his own practice, Levy says, he finds that sharing notes makes him more open with patients and facilitates sensitive conversations with them. “I’ll say to a patient: ‘Your BMI is over 40. The medical term for this is morbidly obese.’ And I’ll ask the patient how he feels about it. No patient likes it, but none has said, ‘That’s wrong; take it out.’ I find this to be a less loaded way to say, ‘You have a weight problem. What are we going to do about it?’”

Levy adds: “I think most of us in health care are in it to help our patients be healthier and take better care of themselves. OpenNotes can provide them with insight into our thinking and written reminders about what we want them to do, making them likelier to follow our medical advice.”