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.