By Meghan Franklin
February 10, 2021
Since the federal Health Insurance Portability and Accountability Act (HIPAA) passed in 1996, patients have had the explicit right to review their medical records and request that corrections or additions be made to their record. According to the Agency for Healthcare Research and Quality (AHRQ), however, few patients take advantage of their right.
OpenNotes is an international movement that is seeking to change that.
OpenNotes proponents believe that transparent communication in healthcare benefits all parties involved--perhaps most importantly, the patient.
The OpenNotes movement began in 2010 with a study in Boston, rural Pennsylvania and Seattle. In the study, patients were notified via a secure email message when a note was signed. They were invited to review the note both after their visit and before their next visit.
The study results spoke to the power of sharing notes with patients. Of the 80 percent of patients who chose to read their notes, two-thirds reported clinically important benefits, like improved understanding of their medical condition. Patients who reviewed their clinician’s notes were also more likely to take their medications as prescribed, and 99 percent said they wanted their current practice to continue offering open notes.
Studies since the 2010 study that started the OpenNotes movement suggest that note sharing can have important implications for patient safety. In a study published in the June 2020 edition of The Journal of the American Medical Association, “Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes,” the authors reported that in a survey with almost 30,000 patient respondents, one in five who read a note reported finding a mistake. Forty percent of those patients perceived the mistake as serious. According to the report, patient-reported errors included mistakes in diagnoses, medical history and medications. The research suggests that inviting patients to review notes and report mistakes helps improve record accuracy and patient engagement in safety.
Craig Joseph, MD, a physician consultant who focuses on healthcare information technology, said historically, there has been a lot of hesitancy about sharing notes with patients. Dr. Joseph said some physicians think that sharing notes (and other aspects of the patient’s record, like lab results) will cause misunderstandings that will result in unnecessary worry for the patient and unnecessary work for the physician. Physicians wonder, for example: If I release lab results directly to patients, will I be barraged by phone calls from patients who noticed a lab value was just barely out of range?
Proponents of the OpenNotes movement say those worries just haven’t played out. According to FAQs posted on opennotes.org, of the more than 250 organizations that implemented open notes prior to November 2020, none reported a significant increase in patient visit time or email traffic.
According to Dr. Joseph, open notes have both nothing and everything to do with info blocking.
“Patients have always been able to request to see their notes, but they often had to jump through a bunch of hoops to get them,” Dr. Joseph said.
Now, with the info blocking compliance date approaching, clinicians should expect that patients will be reading their notes. They should also assume that third party apps will be receiving their notes.
“I wouldn’t tell a physician to change how they’ve been documenting for the past 30 years,” Dr. Joseph said. “I do want to tell them, however, that they need to realize that their notes will be going out into the public. Knowing that, I’d ask them to consider: Is there anything that I can do, often quite easily, to reduce the potential for misunderstanding?”
“If you say the patient was ‘SOB,’ you should know that the reader is likely to interpret that the wrong way,” Dr. Joseph said. (To clarify, it means short of breath).
In addition to avoiding abbreviations that make sense to folks immersed in the healthcare world but may be completely foreign to patients, Dr. Joseph advised that physicians think about how they can restate things in a way that fosters a positive physician-patient relationship.
“Instead of saying, for example, ‘The patient is non-compliant with my recommendations,’ you could say, ‘The patient has expressed concerns with my recommendations,’” Dr. Joseph said.
Knowing that notes will increasingly be shared, even if just with the patient, doesn’t mean physicians shouldn’t say anything negative about patients. Dr. Joseph said physicians should always use the most scientifically accurate language.
“There is nothing wrong with writing that someone is ‘obese.’ That’s a clinical term. But, maybe you need to think about how you explain that in the office visit. Show your patient the BMI range and what numbers correspond to underweight, overweight, and obese,” Dr. Joseph said.
Dr. Joseph believes the more patients read their notes and engage with their medical record, the better.
If organizations believe that patients and/or their caregivers can be true partners in patient safety and help improve clinical outcomes, patients should not only be given access to their notes, they should be encouraged to review them and reach out with questions or concerns.
Before he became a physician informaticist, Dr. Joseph was a practicing pediatrician for almost a decade. Dr. Joseph said that he always encouraged patients to call his office if they hadn’t heard about lab results in the expected time frame. “I didn’t want parents to assume that if they didn’t hear from us, everything was fine. I wanted them to assume that something was wrong: We didn’t get the results back; I didn’t review them. I wanted parents to play an active role on our team.”
Encouraging patients to review their notes can also help tremendously with patient understanding. “In the moment, when a parent is dealing with a sick child, for example, they are often not able to understand and fully process what you are saying,” Dr. Joseph said. Making notes readily accessible allows them to go back and review any recommendations, next steps, etc.
Dr. Joseph said that from a technical perspective, sharing notes with patients should be fairly easy. Electronic medical record (EMR) systems can be configured to allow providers to automatically share their notes upon signing or to prevent a note from being shared with the simple click of a button.
Dr. Joseph thinks the bigger challenges for organizations preparing to comply with info blocking rules will be:
Info blocking rules aside, “We should make it easy for clinicians to share their notes with patients. It’s the right thing to do,” Dr. Joseph said.
About the expert: Craig Joseph, MD, is certified by The American Board of Pediatrics and The American Board of Preventive Medicine with a subspecialty in Clinical Informatics. A practicing pediatrician for nearly a decade, Dr. Joseph is now a physician informaticist who helps organizations use technology to improve clinical documentation, quality assessment and improvement programs, clinical decision support, regulatory compliance, reporting analytics and more. He is currently Chief Medical Officer at Nordic Consulting Partners, Inc.
About the author: Meghan Franklin is a writer and strategic communicator with an M.A. in Rhetoric and a deep background in healthcare. As a former healthcare IT project manager and communications specialist at one of the nation’s leading children’s hospitals, she loves delving into healthcare topics. She values working with individuals and organizations on a mission to do something good.