Patients Will Soon Have Access To Clinical Notes—Are You Ready?

Patient records have been around for millennia. Evidence from antiquity shows that medical records initially functioned as a means to convey treatment plans.¹ It wasn’t until the early 20th century that record keeping became a standard hospital medicine practice. In just the past 20 years, clinical notes transitioned from paper to pixel. Despite these advances, the creation and interpretation of medical notes have remained in the domain of clinicians (and coders), with few persevering patients and family members willing to make the arduous journey to the medical records department for a stack of printouts or a CD-ROM. That’s all about to change.

History of Patient Access to Medical Records

Giving patients easy access to their medical records is a relatively new concept. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) mandated access and the ability to amend one’s medical record. In 2009, the Obama administration signed the Health Information Technology for Economic and Clinical Health Act (HITECH) into law, which accelerated the adoption of electronic health records (EHRs). Hospitals and clinics could earn financial incentives if they demonstrated “meaningful use” of those EHRs—including measures of patient access through an online portal.

Today, more than 50 million U.S. patients have logged into their EHR portals and have the opportunity to view some aspects of their medical records—past and upcoming appointments, medical history and medication lists, and test results.

But viewing clinical notes through the patient portal hasn’t been broadly possible—until now. Specifically, in April 2021, provisions against “information blocking” in the 21st Century Cures Act (signed in 2016 with broad bipartisan support) will take effect. For the first time, patients will have easy digital access to the inner workings of the emergency physician’s mind.

Why is this happening? The genesis of this part of the Cures Act, and subsequent rulemaking from the Office of the National Coordinator for Health Information Technology, goes back to groundbreaking research in ambulatory clinics that started more than a decade ago.

The OpenNotes group (www.opennotes.org) showed that giving patients digital access to visit notes was associated with improved health care literacy, adherence to therapy, better doctor-patient communication, and higher patient satisfaction scores.² Primary care physicians’ initial concerns about increased time charting, or responding to patient requests for editing documentation, didn’t pan out—both in the literature and online EHR forums.^3,4 Surprisingly, in contrast to many initial studies that showed high patient participation in viewing their notes, deployment of OpenNotes across many health care specialties has found rates as low as 10 to 20 percent.^4,5 It’s clear, however, that the patients, families, and caregivers of those who do have access really appreciate it. However, despite these advantages for patients, health care systems generally report a 10 to 20 percent read rate for notes.

What About the Emergency Department?

What’s true for primary care and ambulatory settings, though, may not extend to emergency department and inpatient settings. Emergency physicians have no ongoing relationships with their patients (except for a few frequent utilizers). The evidence of benefit for digital note sharing in inpatient settings is far more limited and nonexistent for emergency departments.

Still, there’s evidence that ED patients do not have adequate opportunity to ask questions of their clinicians. Only a small fraction of physicians report taking the time to confirm a patient’s understanding of discharge instructions.⁶ It’s reasonable to expect that easy access to ED notes could improve a patient’s understanding of their doctor’s concerns and decision making and even facilitate outpatient follow-up.

But those benefits are only realized if the shared ED notes are intelligible to the patients. We often write notes with an audience of fellow physicians, billing companies, or lawyers in mind. Abbreviations abound, as does extraneous information from elsewhere in the EHR designed to show coders how thorough we’ve been. While note bloat isn’t going away anytime soon, it behooves us to carve out a part of our documentation that clearly explains key findings and medical decision making. Just as important, now is an opportunity to reflect on the subtle ways in which documented descriptions of our patients could be interpreted as hurtful or even offensive, even though that is not our intent. (See below for some tips to limit patient misinterpretation of your notes.)

With this in mind, the new rules acknowledge some notes should not be shared. Specifically, “information blocking” is permissible and the sharing options in the EHR can be unselected in the following cases:

Safety concerns: Release of information may cause real harm to the patient, such as with intimate partner violence or notes regarding mental health and substance use.

Privacy concerns: Examples include the release of information on minors when parents have proxy access to the portal.

HIPAA violations have carried heavy fines from the outset. It’s not clear what will happen if a patient complains to the Department of Health and Human Services of information blocking (ie, that they could not access their chart digitally in a timely fashion). In the past, hospitals have been fined under this rule for failing to provide paper records.⁷ It will be important to stay up-to-date with your individual hospital’s policy as these regulations will be revised on a state and hospital level.

What to Expect

How will this impact ED practice? There will probably be a period this spring during which we quickly adjust our style of writing notes. How much of an adjustment will depend on your current habits and the fraction of patients who are likely to access the portal or make edit requests. Primary care physicians were motivated to edit their notes to address patient requests; ED and inpatient health care workers don’t have an ongoing relationship with most patients and may not agree with requests nor see the upside in complying. What this means for liability or patient satisfaction is an open question.

The Future of Note Sharing

Beyond digitally sharing notes, there are other milestones related to 21st Century Cures coming up. In 2022, EHRs will make application programming interfaces (APIs) available to patients to facilitate selected data sharing with third parties. We anticipate that services will pop up to “translate” notes and interpret data for patients; APIs will also enable patients to integrate their data with an emergency department’s EHR.

Beyond that, trials are under way for OurNotes a system that encourages patients to formally contribute to their medical records. This would allow patients to generate part or all of the history, which is then reviewed by the physician before being accepted as part of the medical record. As with many things in health information technology, the details of the implementation will determine whether this is a helpful time-saver or a step toward bloated, inaccurate notes.

For now, we anticipate that ED patients with portal access will understand more from their visit, helping patients, families, and downstream clinicians understand what occurred during an emergency department visit, the relevant medical decision making, and after-care expectations. Hopefully the trade-off of writing clearer notes and fielding some more edit requests will prove easy enough to make it worthwhile for the patient’s benefit

Tips to Limit Patient Misinterpretation

Patients react poorly to terms like “morbidly obese,” “complains of,” and “bounceback.” Alternatives like “BMI >40,” “presents with,” and “revisit” are less likely to prompt complaints or edit requests. Stylistic writing tics taught in medical school such as “patient endorses” or “patient admits to” might confuse patients or worse. Terms such as “sickler” for sickle cell anemia patients and even “vasculopath” for patients with coronary or peripheral artery disease can easily be interpreted as dismissive or reductive and should specifically be avoided.

If a patient says something remarkable, use quotations to describe it rather than a glib summary.

Limit usage of contact information in the chart that the patient should not directly have access to, such as consultant’s phone numbers.

Be careful with your macros and dot-phrases—it looks careless when atrial fibrillation patients read that their cardiovascular examination found a “regular rate and rhythm” or amputees read about “well-perfused extremities bilaterally.”

On the bright side, dot-phrases can help you spell out confusing abbreviations or explain arcane terms.

The sharing options in the EHR should be unselected if there are safety or privacy concerns (eg, if the notes have sensitive material that the patient doesn’t want seen by a domestic partner or parent).

Dr. Gowda is an emergency physician at Kaiser in Southern California.