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Should Your Medical Records Be an ‘Open Book’ to Your Patients? Neurologists Test the Waters

Avitzur, Orly, MD, MBA

doi: 10.1097/01.NT.0000422839.50881.38

Traditionally, neurologists have regarded medical records as a mechanism to record patient encounters for future visits and communicate recommendations to referring physicians. On rare occasions, patients may have requested to see their charts for use in disability proceedings, personal injury litigation or medical malpractice lawsuits, leaving many of us apprehensive. Some of us worried, even when secondary gain was not an issue, that patients who read their records would become confused or anxious by terms they were unable to understand, abnormal results that were inconsequential, or by revealing prognoses that were grim.

But in recent years, patient-centered medical care has begun to replace the paternalistic model of care, and a new “open notes” movement, driven by consumer advocates, and catapulted into use in pursuit of electronic health record (EHR) “meaningful use” incentive dollars, is beginning to gain traction among physicians and patients alike. The next stage of meaningful use will not only require physicians to use a patient portal, but also to ensure that five percent of their patients use it.

Indeed, a study of 105 primary care physicians and over 13,000 patients, published in the Oct. 2012 Annals of Internal Medicine, revealed some unexpected results: patients accessed their notes frequently, and a large majority reported clinically relevant benefits such as increased compliance to medications, greater understanding of their medical issues, and improved recall of their plans for care. Contrary to the anticipated fears of many doctors, few patients reported being confused, worried or offended by what they read. And the doctors found it resulted in no more than a modest effect on their work lives; moreover, none elected to stop at the end of the experimental period.

These results come as no surprise to a number of tech-savvy neurologists who have implemented such transparency on their own. For the past 18 months, solo neurologist, Elaine C. Jones, MD, of Bristol, RI, has been printing out a patient note at the end of each office visit as part of her meaningful use requirement. Consequently, she has changed the notes that she writes.

“My notes used to be more ‘wordy’ and ‘clinical,’ and now they're more succinct and understandable,” she explained. For example, if she selects a technical word, say cervical radiculopathy, she tries to explain it in lay terms — adding pinched nerve in the neck — in parentheses. She includes brand names for references to generic medications. “I absolutely think about what I am writing since I know the patient or a family member could read it,” she said.

Aside from rare legal or social situations, Bruce H. Cohen, MD, director of neurology at Children's Hospital Medical Center of Akron in Ohio, who sees children and adults, also gives patients or parents copies of their records as they walk out of the office. If the printer is not working or his note is not finalized, a copy of the note is placed in the mail. The only major exception is if the information would be damaging to the patient if read — for example, he or she is dying of a brain tumor — in which case he gives the note to the spouse. He believes that this makes sense since the patient (or parent) contributes to the note by providing history and participating in the development and implementation of the plan. He also finds that it's the best method to perform a second medication reconciliation as well as a problem list reconciliation before the patient has left, two core features required for meaningful use. “On occasion, I've made an error on a historical item, which I can then correct, and on other occasions, I've left something out of the note or included something the family had not been made aware of, which we can then discuss,” he said. “I do get calls requesting corrections, but 99 percent of the time I welcome the patient asking me to correct my note.”

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Overall, Dr. Jones, who serves as chair of the AAN Government Relations Committee, finds the practice beneficial to herself and her patients; she advocates for patients having access to their entire medical record. Dr. Jones strongly believes that patients have to be involved in their health and, in fact, that this is the part missing from health care reform. “While it does change the way we ‘talk,’ it holds us to a higher standard,” she said, adding that she doesn't think it's a good idea to keep secrets from patients.

“We need to be honest and straightforward with them; this is how one develops trust and a collaborative relationship,” she said pointing out that it's a change from the way medicine has been practiced in the past. “I have always approached my practice as a collaborative effort with patients and I'm uncomfortable when someone says to me, ‘You are the doctor, I will do whatever you think.’ Everyone is different, and since medicine is an art, not a science, I think we have to work together to develop an individual approach to treatment…whether it's for cancer or migraine.”

Jerzy P. Szaflarski, MD, PhD, director of the University of Alabama at Birmingham Epilepsy Center, ensures that patients review the reports by reading selected portions to them while they are still in the office. “I've been doing this for a while to make sure that my understanding of the facts is the same as their understanding,” he said. “While this does not constitute ‘approval’ by patients, it has clearly improved my communication with them, especially when the history changes or new facts become available,” he explained.

To her surprise, Dr. Jones has discovered that most patients don't read these summaries. “I know this partly because they've told me, and partly because they sometimes call and ask questions which would have been answered by reading the summary, such as how to escalate or taper a medication,” she said. Nevertheless, she's had positive feedback from some patients and families about getting the summary at the end of the visit.

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When asked to consider the future, approximately three out of five patients participating in the Annals study and approximately one third of doctors agreed that patients should be able to add comments to their doctors' notes. But, it's unclear how frequently such requests actually arise. Dr. Cohen has had only one demand for a change to which he would not agree. It came from a patient with a Munchausen by proxy issue.

There's also been one “sort of funny” situation in which the printout of one of his adult brain tumor patients recorded his sexual history as “sexually active with partner(s).” The (s) really upset the spouse and he had to explain that the computer program gave no option for “sexually active with partner” or “sexually active with spouse.” She understood, in the end, despite her initial alarm, and the conversation prompted a discussion that resulted in a prescription for tadalafil (Cialis).

Child neurologist Jeffrey R. Buchhalter, MD, PhD, professor of paediatrics [sic] & clinical neuroscience at Alberta Children's Hospital in Calgary, has had a few instances in which the family has requested correction to a note, for which he has been grateful. But because he sends his note to the family, he's careful how he phrases difficult psychosocial issues, recognizing that there could be some type of backlash.

“It's interesting that in those situations — usually somatization disorders — the family either doesn't complain or just leaves the practice,” he said. He believes that compliance is greatly enhanced by making records available. “An advantage of providing families with notes is that it provides documentation for them in writing as to what was said in the office visit and what we agreed to as a plan,” he explained, concluding, “thus, there is an implied contract.”

Daniel B. Hoch, MD, PhD, an epilepsy specialist at Massachusetts General Hospital, has long been a participant in collaborative medicine projects with patients, and has shared his notes as much as various computer systems have allowed. “I have had more than a few patients demand a change to the chart, and in fact, I wouldn't say it's unusual to have my view of things challenged,” he said. “I encourage corrections to the ‘factual’ parts; it's when they demand I change my assessment that they have epilepsy that I draw the line.”

“This is probably more common with stigmatized diagnoses,” he suggested.

“The experience at the UK's National Health Service, and limited studies like the one in the Annals, all point to wide acceptance by patients, with little down side,” he noted. “In this cut-and-paste world, it's often not until a patient gets a copy of his/her note, that some totally inaccurate nonsense is caught and corrected, after months — if not years — of being copied forward from note to note.”

He cited by example some “really simple things,” like the history documented five years ago that has been moved forward without even changing the patient's age. “Patients tend to catch this faster than we do,” he said. “The one caveat I like to point out is that it's dangerous to share your notes with retired English teachers…this has happened to me once or twice, and it's very humbling to have the note returned with all the spelling and grammar corrected.”

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Allison L. Weathers, MD, medical director in the department of Information Services at Rush University Medical Center, is in the process of helping to implement a patient portal in their EHR system in order to meet Stage 2 of meaningful use requirements. “One of the first questions I get from clinicians is a fearful 'Are the patients going to be able to see my notes?'” she said. “At the same time, I also have a growing number of physicians who are requesting an easier way to send a copy of their notes to their patients, and the most recent upgrade of our EHR, Epic, allows this to be done much more simply than the previous version,” she said. She noted that some physicians at Rush are copying the assessment and plan parts of their notes directly into the patient instruction field of the after-visit summary; although the idea is still frightening to some, she said, a growing number of physicians are embracing it.

“From a documentation standpoint, it might take knowing that your patients are going to be seeing your notes to finally get clinicians to stop producing some of the nonsense that is being generated by the improper use of EHR documentation tools,” Dr. Weathers added. “Patient advocacy groups are going to keep fighting until full access to EHRs is a requirement of meaningful use, so physicians have to come to terms with this as an eventual reality,” she said. “Fortunately, the Annals study shows that the reality isn't as scary as we think it's going to be.”

Dr. Avitzur, a neurologist in private practice in Tarrytown, NY, holds academic appointments at Yale University School of Medicine and New York Medical College. She is an associate editor of Neurology Today and chair of the AAN Practice Management and Technology Subcommittee.

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For the past ten years, CT Lin, MD, chief medical information officer at the University of Colorado Hospital at Denver, has been engaging in research studies that examine patient-accessible electronic medical records — particularly those that facilitate communication and collaborative disease management, and physician adoption of information technology. The initial work was summarized in the 2004 Journal of Medical Internet Research report on a web-based online medical record with electronic communication capabilities to patients with congestive heart failure.

“It turned out that hospital administration loved the idea, particularly in regards to ‘patient loyalty,’ nurses liked it from a ‘patient education’ perspective and found that it contributed very little to their workload, and physicians were ambivalent — with a ‘hey, if it doesn't improve medical outcomes, then it wasn't helpful, was it?’ attitude,” said Dr. Lin. The objective measures did not show a reduced utilization, but anecdotally, patients were very happy with the service, even though the survey data did not show a satisfaction improvement.

Since their initial publication, the University of Colorado hospital has pushed forward with aggressive release of test results (laboratory, radiology, pathology) with some modified time delays: HIV results are never shown; all other lab reports are released immediately (available to patient at the same time as to the doctor); all radiology data are released immediately, with the exception of CT, PET, MRI, which are delayed by seven days (anything that would potentially show a new diagnosis of cancer); and all pathology reports are released at 14 days.“We have released over 3 million results over the past four years in this manner with very little difficulty from patients and physicians,” Dr. Lin said.

—Orly Avitzur, MD

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• Delbanco T, Walker J, Feldman HJ 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.
    • Ross SE, Moore LA, Earnest MA, Wittevrongel L, Lin CT. Providing a web-based online medical record with electronic communication capabilities to patients with congestive heart failure: randomized trial. J Med Internet Res 2004; 6(2): e12.
      ©2012 American Academy of Neurology