Benefits of Sharing Notes With Patients

By Jamie Santa Cruz

Physicians find significant benefits in sharing with their patients the notes documenting discussions and interactions occurring during patient visits.

Since the passage of HIPAA in 1996, patients have been guaranteed access to their medical records, including physician notes, upon request. But there are often delays and fees associated with receiving the records, so physician notes typically aren't readily available to most patients.

Over the last few years, however, some health systems have begun experimenting with "opening" physician notes by making them accessible to patients through online portals. To date, approximately 100 institutions are at various stages in the process of implementing open notes,1 and it's a practice proponents say has significant benefits in terms of both improved patient health and improved patient satisfaction.

Benefits of Open Notes
According to John Santa, MD, MPH, director of dissemination for OpenNotes, an initiative launched in 2010 to explore the effects of providing access to physician notes, the major benefit of providing patients with their clinicians' notes is that it helps them remember exactly what was discussed during the visit. "We know that patients forget a substantial amount of what goes back and forth in a face-to-face encounter—some people estimate 50% of the information is forgotten. The note … can provide some of that 50% and reinforce the other 50%," says Santa, who previously practiced internal medicine at the Veterans' Administration.

In many cases, there may simply have been too much information presented at the visit to remember. And in some cases, especially with geriatric patients, hearing loss or memory impairment may be an issue. "There are so many reasons why what we say in the doctor's office doesn't always end up happening," says Rosemary Laird, MD, a geriatrician and the executive medical director of Florida Hospital for Seniors in Winter Park, Florida.

While clinician notes are useful for patients themselves, they can also be very helpful to family members of older patients, who often play an important role in assisting with the care of older adults. In studies of patients who received access to their physicians' notes, roughly one-half of patients believed they should have the option to share their physicians' notes with family members, and up to 4 in 10 actually do share their notes.2,3

Providing office notes to patients can make future health care visits more productive, according to Richard Martin, MD, director of Value Based Care at Geisinger Health System and a family medicine physician at Geisinger Mt. Pleasant in Scranton, Pennsylvania. Martin, an early participant in the OpenNotes research project, has been making his notes accessible to patients since 2010 and says he has found that patients are more prepared for each visit when they can review notes from previous visits.

Judging from the 2012 OpenNotes pilot survey of three study sites, transparent notes are extremely popular among patients—99% of patients who were able to access their physicians' notes during the study year wanted the practice to continue, and nearly 90% said their ability to access notes would impact their choice of provider in the future.3 And the notes appear to be particularly popular among geriatric patients, according to Martin. He initially anticipated that older adults would be less likely to actually view physicians' notes, given that accessing notes through Geisinger's online portal requires some technological proficiency. But the opposite has proven true; at Geisinger, Martin says, geriatric patients actually make up the majority of note readers.

Workload and Liability Concerns
Despite the potential benefits and patient enthusiasm, pushback from physicians is relatively common. According to Santa, the most common concern is that physicians' workloads will increase as a result of opening their notes, due to the extra time required to write each note or due to increased e-mail or phone communication from patients reading the notes. "They've had experiences where various [other] ideas have been tried and those resulted in them working at home, working longer hours, etc," Santa says. "They are worried that OpenNotes will be like that."

"I have had the experience where someone calls and says, 'In line 15 of the third page, it says I had a hysterectomy in '67 and it was actually '69,'" says Laird, who currently does not open her notes but instead offers after-visit summaries with the highlights of the visit. Though she acknowledges that such calls are rare for her, they can certainly fuel physician concerns about workload.

According to Santa, a small percentage of physicians will indeedhave to work harder with open notes, specifically by spending more time on the note itself. "Some doctors don't write good notes, and now they have to," he explains, adding that physicians in this category probably needed to make changes anyway. But most clinicians do not find that their workload increases after opening their notes. The 2012 OpenNotes pilot survey, which was published in the Annals of Internal Medicine, showed that few physicians actually spent more time writing notes in the one-year period after implementing open notes.3 Likewise, e-mail traffic to physicians did not change significantly, and workload concerns among physicians had diminished markedly by the end of the study year.

Fears about medical malpractice are similarly misplaced, according to Santa. Physicians often worry that if and when patients spot errors in their notes, these errors will lead to a loss of trust in the physician and result in more lawsuits. In fact, according to Santa, 20% to 30% of patients do report errors in their notes, most of which are minor and some of which are subjective. But the health systems where open notes have been implemented to date have seen no increases in liability claims, Santa says. If anything, patients are more satisfied and more engaged; upward of 70% of patients who were able to access physician notes reported taking better care of themselves, understanding their health conditions better, feeling more in control of their care, and taking medications better.3

To Censor or Not to Censor
If physicians make it past their concerns about workload and liability, another set of practical considerations looms: specifically, how to go about writing a note that meets the needs of all interested parties, including patient, physician, and payer.

Physicians often assume, Santa says, that notes written in such a way as to be accessible to patients will no longer be as effective for the physician's purposes—that they will have to be dumbed down and will have to avoid the shortcuts or abbreviations that physicians often rely on.

It is true, he says, that physicians should minimize acronyms and pejorative terms in notes visible to patients. But Santa tries to reassure physicians that the last thing they should do is dumb down their notes by avoiding actual medical terminology. "This is still a very important medical document; that's what it should be." And patients, he says, are typically fine with that. "Where we have data from folks who have implemented open notes, 80% to 90% of patients say they are able to read the note, and the same percentage say they are able to understand it."

Then there is the question of whether physicians should hide potentially upsetting information from patients. According to Laird, the knowledge that a patient may be reading her record of the visit prompts her to present her evaluation of the patient less bluntly. Take, for example, a patient complaining of memory loss for whom Alzheimer's disease is a concern. "If I'm in the formative stage of a diagnosis of something like Alzheimer's disease, and if I know the patient's not taking it home and reading every word, I may put something to the effect of, 'I'm significantly worried about this being possible Alzheimer's disease, and this is what we need to do for testing." That kind of frank wording, she says, is necessary to justify the visit for billing purposes, but it is not necessarily language she wants patients to read—and it's not necessarily language that family members want presented to the patient, at least before the diagnosis is confirmed. "Some [patients] will do perfectly fine with it and others will have difficulty," she says.

There are certain situations, Santa says, where a hidden note is indeed advisable, such as in cases involving domestic violence, where an open note could result in harm to a patient. However, those situations are the exception. "Our philosophy is that it should be rare for a physician to not be sharing and communicating to a patient what they are thinking and why they are thinking it," Santa says. "The note should accurately convey what they are considering and thinking about."

Martin agrees that there is generally no need for physicians to hide information from patients, even when there are potentially upsetting diagnoses at stake. "Things that I suspect, more often than not, patients suspect them too. If somebody comes in with a tremor, the first thing they're worried about is Parkinson's disease. So we'll usually have a discussion about that in the office and I'll just put in my notes that it was discussed."

Are there times when the content of a note is upsetting to a patient? Yes, Martin says. But seeing startling or unpleasant diagnoses in writing can actually be beneficial for patients in the long run. Martin recalls once having a patient whose body mass index was excessively high, leading Martin to record a diagnosis of morbid obesity in the notes for that visit. Although Martin had talked with the patient about his weight and about his need to see a dietitian, the patient became upset when he saw the diagnosis of "morbid obesity" in the written record. Martin explained that his terminology represented a medical diagnosis and the patient ultimately calmed down, but the effect of the written diagnosis remained with the patient—with positive result. "It actually motivated him to lose a significant amount of weight," Martin says.

The Future of Open Notes
While physicians are often hesitant to open their notes beforehand, most who try it eventually become supportive. In the OpenNotes survey, none of the physicians who participated in the one-year trial of open notes opted to discontinue the practice at the conclusion of the study.3 At Geisinger in particular, Martin says, some physicians initially opted out of open notes when they first became available to physicians on a general basis, but today the vast majority participate and are comfortable with open notes.

Although she has some concerns about open notes and has not opened her own, Laird is convinced that transparency with respect to physician notes is the way of the future. "Doctors will adapt and the documentation will adapt," she says. "There's no question that it will be open access soon."

And although some physicians may continue to feel uncomfortable about that prospect, Santa challenges them to do some soul searching and consider the situation from their patients' perspectives. "I've talked to a couple of thousand physicians about open notes, and I ask them every time, 'I understand your concerns; now tell me, as a patient, do you want to see your notes?' Every one of them does."

— Jamie Santa Cruz is a freelance writer based in Englewood, Colorado.

References
1. Jacob JA. Patient access to physician notes is gaining momentum. JAMA. 2016;315(23):2510-2511.

2. Jackson SL, Mejilla R, Darer JD, et al. Patients who share transparent visit notes with others: characteristics, risks, and benefits. J Med Internet Res. 2014;16(11):e247.

3. Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157(7):461-470.