The OpenNotes Movement—Why Doctors Are Sharing Clinical Notes With Patients

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Just when you’ve gotten used to electronic health records (EHRs), now comes another idea that could transform the role of documen­tation in medical practices: giving patients open access to clinical notes.

The OpenNotes approach. Open­Notes is a concept, rather than a specif­ic product. As originally envisioned by its founders, it relies on an EHR-facili­tated process to give patients access to their records, said Susan S. Woods, MD, MPH, a leader in the OpenNotes move­ment. Whenever a note is added to a patient’s record, the patient can review it via a secure Web portal and can email the physician to correct errors or to clear up confusion. “To be true Open­Notes, there has to be easy and secure online access for patients,” said Dr. Woods, who is director of patient ex­perience at the Connected Care Office of the Veterans Health Administration (VHA).

Six years of OpenNotes. The OpenNotes movement was launched in 2010 with a pilot program at 3 insti­tutions. The resulting study, published in Annals of Internal Medicine, found that virtually all patients wanted the practice to continue, with more than 4 out of 5 patients reading their notes and a large majority reporting clini­cally relevant benefits.¹ The researchers also noted that 2 initial concerns—disruption of workflow and patients being alarmed by what they read—did not pan out, and they concluded that OpenNotes was “worthy of widespread adoption.” Today, dozens of institutions and medical groups have joined the OpenNotes movement, giving more than 7 million patients access to their clinicians’ notes.²

Overcoming initial misgivings. Thomas A. Oetting, MS, MD, has used OpenNotes since 2013, when it was adopted at the Iowa City, Iowa, VA Medical Center, where he is chief of the eye service. “When we first entertained the notion that patients were going to be able to look at our charts, it was scary, because we hadn’t really edited our notes with that in mind. So it was a little bit of a culture shock,” he said.

Today, he has come to appreciate OpenNotes as a tool to bolster the pa­tient-doctor relationship. “It gives pa­tients a better understanding of what’s happening, a greater sense of control, and a greater sense of how much work we’re putting into their care.”

A growing movement. Last Decem­ber, OpenNotes’ longtime sponsor—the Robert Wood Johnson Foundation—was joined by 3 other nonprofits that announced $10 million of new funding. This will support OpenNotes’ ability to help providers adopt the approach, evaluate the initiative’s impact, and reach a wider range of patients. Their goal is to give 50 million patients access to their medical notes. Meanwhile, some EHR vendors, anticipating the desire for more transparency of patient records, have preconfigured their sys­tems to enable online patient access via email and Web portals, said Dr. Woods.

Benefits of Open Access

Strengthen the patient-physician connection. A recently published study determined—as earlier research suggested—that OpenNotes fosters a more cooperative and trusting doctor-patient relationship.³ Conclusions in the study by Esch et al. were based on survey answers from 414 women and 162 men (aged 23-88 years) who, for at least 1 year, had accessed their clinical notes via a secure Web portal. The researchers also interviewed 13 of the patients.

Enhance patients’ understanding. Esch et al. wrote, “Our analyses suggest that as patients reflect on the experi­ence, their thoughts fall into 5 themes … that focus on understanding, rela­tionships, quality, self-care, and hopes for the future. Within these themes, un­derstanding came up most frequently, with emphasis on using doctors’ notes for refreshing memory and improving or confirming understanding of one’s own health information. In addition, patients pointed to increased trust, improved management of medications, and a stronger sense of control.”

Patients can spot errors in your notes. Dr. Oetting noted, “Nobody cares more about the medical record than the patient, of course, so at a time when the patient is aware, they can review and proof their record. They can say, ‘This is a mistake and it needs to be changed.’ So this improves safety for the time when they might come in to the emergency room and not be able to communicate those things.”

Some Pitfalls to Avoid

Patient expectations are evolving—so write clinical notes accordingly. Under HIPAA, patients have the right to access their medical records, said Dr. Woods. That right, combined with the growing popularity of OpenNotes, means that physicians should remem­ber that anything written in a clinical note today might someday be read by the patient, she said.

The liability issue. Language that can be interpreted as judgmental might upset the patient who reads it, eroding trust and possibly exposing the physician to liability, said Hans K. Bruhn, MHS, a senior risk management specialist at the Ophthalmic Mutual Insurance Company (OMIC). “You need to be careful that your comments are professional and concise, and you should not speculate,” Mr. Bruhn said.

Eschew doctor-speak. “There is this cultural difference that has to occur, where you’re writing with everybody in mind, and not just for other doctors,” said Dr. Oetting. With patients as part of the target audience, clinical notes should either avoid terms that might confuse the patient or define them in context. “I try to make the notes so that they are patient centered,” said Dr. Lee. “I define terms as I go along, which is surprisingly easy to do. It doesn’t take a lot of extra time. I’ll say something like, ‘The right eye turns in (esotropia),’ so the family knows what esotropia is.”

An Alternate Approach

Dr. Lee designed a system that does not involve a Web portal. “What I’m doing is a workaround, but it’s still an ‘open notes’–style practice, because I’m shar­ing my notes with patients,” she said.

How Dr. Lee’s system works. The children’s hospital where Dr. Lee practices does not provide electronic records access for patients, but she wanted to open up her notes to them. “So in each of our exam rooms, we have Dragon voice recognition software [Dragon NaturallySpeaking, Ver­sion 12.0; Nuance Communications], and it has proved to be a great tool for communicating with my patients. I just speak, and it types what I’m say­ing into the EHR,” she said.

“I dictate as the visit goes along, with the patient and parents present. I go through the problem list, problem by problem. We talk about it as we go, and they can amend or ask questions about what I’m writing, right away. Then I copy what I’ve dictated into the after-visit summary, which they get on their way out. They don’t have any electronic access to it, but it’s a way that they can have the notes to read later.”

What About Doctors’ Fears?

Medical doctors who are new to OpenNotes frequently express concern that open access to clinical notes will increase patients’ anxiety about their conditions and will prompt a flurry of calls and emails to the practice, said Dr. Woods. But that hasn’t been the case, according to the Esch study.³ Indeed, 2 patient groups that ophthalmologists commonly treat—women and the elderly—reported the most positive experiences with OpenNotes, noted the authors. “Enhanced trust—regarded as a key part of an improved patient–physician relationship—was frequently reported. … This was particularly true for female patients … and older patients.”

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1 Debanco T et al. Ann Intern Med. 2012;157(7):461-470.

2 www.opennotes.org/who-is-sharing-notes. Accessed April 8, 2016.

3 Esch T et al. BMJ Open. 2016;6(1):e010034.

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Mr. Bruhn is senior risk management specialist at OMIC, in San Francisco. Relevant financial disclosures: OMIC: E.

Dr. Lee is a pediatric ophthalmologist at St. Luke’s Children’s Hospital, in Boise, Idaho. Rele­vant financial disclosures: None.

Dr. Oetting is professor of clinical ophthalmolo­gy and director of the ophthalmology residency program at the University of Iowa, and chief of eye service and deputy director of surgery service at the VA Medical Center, in Iowa City, Iowa. Relevant financial disclosures: None.

Dr. Woods, a general internist, is director of patient experience in the Connected Care Office of the VHA and Associate Chief of Staff for Informatics and Research at VA Maine Healthcare System. Relevant financial disclosures: None.

See the disclosure key at www.aao.org/eyenet/disclosures.