In a classic "Seinfeld" moment from 1996, the character Elaine is waiting in the doctor's office and peeks inside her medical chart, only to find that someone had written that she was "difficult." The doctor walks in, grabs the file and tells Elaine, "You shouldn't be reading that." She questions him about that notation and subsequently is unable to get proper treatment for a rash.
That long has been the attitude healthcare professionals have had toward patients reading clinical notes, but some well-known institutions are demonstrating that patients are happier and have better medical outcomes when they are able to see everything in their own medical records. Since 2010, Beth Israel Deaconess Medical Center in Boston, Geisinger Health System, based in rural Danville, Pa., and Harborview Medical Center in inner-city Seattle have been giving many patients online access to their entire ambulatory medical records—not just summaries—including clinician notes. The results of this initiative, dubbed "OpenNotes," have been resoundingly positive.
In a yearlong study at the three organizations, 99 percent of participating patients said they wanted to continue seeing their full charts, and 85 percent said that records access would be a factor in selecting future care providers, according to results published in the Annals of Internal Medicine in 2012. About two-thirds were more likely to take medications as prescribed after a year of OpenNotes.
While some physicians did have to change how they documented patient encounters, less than 10 percent of reported that patients with open access took up more of their time or bombarded them with questions by e-mail. Not a single one of the 105 doctors in the initial trial dropped out after a year, as researchers reiterated in January in the New England Journal of Medicine.
Physicians initially were concerned that opening their notes would impact workflows or "scare the hell out of patients," says one of the program's founders, Dr. Tom Delbanco of Harvard Medical School and Beth Israel Deaconess. But neither has happened. According to Delbanco, the results trump the concerns. "We were astounded by the enthusiasm," he says.
"What's been amazing is how little impact this has had on doctors," Delbanco adds.
Since the initial test, M.D. Anderson Cancer Center in Houston, Cleveland Clinic, Mayo Clinic, the U.S. Department of Veterans Affairs and others have also endorsed OpenNotes. To date, more than 2 million patients nationwide have been granted electronic access their full records. "We've gone way beyond an experiment at this point," Delbanco says.
Writing in the Journal of the American Medical Association in November, James A. Guest and Lynn Quincy of Consumer Reports called for OpenNotes to become a standard of care. "That's a major thing to propose," Delbanco says. To get there, however, will take some adjustment.
Patients have had a legal right to see their records at least since the Health Insurance Portability and Accountability Act (HIPAA) privacy regulations took effect in 2002, a fact that has not been widely publicized—though federal health IT officials are getting ready to launch an outreach campaign. "Many aren't aware they have the right," says Dr. Susan S. Woods, Portland, Ore.-based director of patient experience for connected health at the VA, which has been using OpenNotes since early 2013. "Getting [records] is not very easy."
OpenNotes represents a lowering of the bar to access, Woods says, but added that the "jury is still out as to what degree" this initiative could change the landscape. Potentially it could alter communication, behavior and documentation, according to Woods.
Patients feel more prepared when they go to the doctor's office, believe they know more about their health and are more engaged when they have access to full notes, but also ask more about what is in the notes, Woods reports. "The communication is really enhanced," she says.
However, OpenNotes can lead to "subtle and valuable changes" to how clinicians write notes, Woods says.
Dr. Todd Rothenhaus, chief medical information officer of health IT vendor Athenahealth, in Watertown, Mass., indicated that physicians have begun to change how they formulate the assessment and plan part of the "SOAP" note, a documentation style that also includes subjective and objective components. They may have been taught Latin terms in medical school, but patients were not. "Digitus minimus is just the little finger," Rothenhaus says, explaining how clinicians can simplify their writing.
Rothenhaus says documentation has become overly complex in the last two decades, in part because of Medicare requirements and also due to fears of being sued. Rothenhaus would like to see a return to what he calls a "Tweetable moment" that can be expressed in short sentences. "Hospital charts shouldn't look like a copy and paste of previous notes. It should look like a wiki," he says.
"It's like a Hitchcock movie," Rothenhaus quips. "Only every ninth word comes into focus."
Medical schools do teach students to speak without using a lot of jargon, but clinical notes historically have been written for other healthcare professionals, not the general public. "You have to be clear," says Dr. Anjali Gopalan, a Robert Wood Johnson Clinical Scholar in residence at the University of Pennsylvania and an internist at the Philadelphia VA Medical Center.
"Physicians don't have a great understanding of health literacy," says Gopalan, who says she has some issues to resolve before she would agree to open her notes to patients. "We should continue to teach the importance of communicating more clearly."
Gopalan, who has a particular interest in diabetes care, says that physicians talk about hemoglobin A1c all the time without offering much context or explanation. Yet, according to Gopalan, only 25 percent of people with diabetes fully understand what the A1c value means to their health. "It's not always as simple to communicate complex information as we think it is," she says.
Lawrence, Kan., solo practitioner Dr. Ryan Neuhofel has had to change some of his documentation conventions since adopting OpenNotes last summer.
His NeuCare Family Medicine practice dispenses some medications. On prescriptions, Neufeld used to write shorthand instructions such as "1 po qd," and let the pharmacist translate, but now he spells it out as "1 tablet by mouth, once a day," knowing that the patient will see it. "My overall philosophy was to be accessible to people," says Neufeld.
At NeuCare, if the practice uploads anything to a chart, the general rule is that a patient can view it. Neufeld said that he would only consider withholding information in a highly sensitive situation, such as if he suspected child abuse by a parent who would be reading the record. "I always believe the default should be [that] it's the patient's record," he says.
This openness does mean that clinicians have to be mindful about what they write. A common medical abbreviation is "SOB," which means shortness of breath, but it's easy to see how a layperson might misinterpret it. Woods no longer puts this term in patient charts. "I write 'dyspnea,'" Woods says. "People look it up."
Other terms that might cause alarm include "abuse," according to Woods, and, yes, "difficult." "There are certain words we will be more careful about," she says.
"We can't have blinders on," says Gopalan, who would prefer that physicians provide adequate explanations so patients do not have to look up many terms that they don't understand, then try to find the right result. Instead, physicians should vet online tools for accuracy. "We need to be providing the reliable, easy-to-understand sources," Gopalan says.