It turns out that opening up patient records was the easy part. After more than a decade of advocacy, the 21stCentury Cures Act mandated that, as of April 5, 2021, health care providers had to make most forms of clinical notes available free of charge and without delay. After more than half a year in practice, few reports of major problems have surfaced.

Yet the open notes ideal of easy access to health records—something that often makes patients better partners in their own care—has run up against challenges more deeply seated in the health care system. Equitable access to technology, lack of interoperability between physicians’ offices and a fundamental mismatch between medical English and plain English still inhibit doctors from communicating with their patients—or with each other.

Open Notes took off in 2010, when researchers at Beth Israel Deaconess Medical Center started a pilot project for clinicians to share their notes with patients through an online portal. With the pilot a success, a new organization, OpenNotes, formed and continued the work. In a follow-up study seven years later, almost all of the original participating patients supported increasing access to their clinical notes, in part because it reminded them of their care plans and helped them prepare for future visits.

But some demographics of patients have yet to realize these benefits. In a recent large study conducted between February and May 2021, fewer than half of almost 100,000 patients in one health system’s emergency departments and urgent care centers had access to the patient portal. Of those, only 14% had read a note from their files. Access was less likely for patients under 18, or older than 65, and for Black patients and non-English speakers.   

Now that the program is nationally mandated, other concerns are emerging.  Some pathologists have resurfaced concerns that confusing or alarming results might reach a patient before a physician has had time to explain them. In fact some states, such as California, block the release of some records prior to physician review—a grey area of legal conflict where good answers don’t yet exist.

Patients may also expect a coherent, integrated health record where none exists. No standard application for sharing medical information exists in the United States, so information from different providers gets siloed in incompatible portals. A Jay Holmgren, assistant professor of medicine at the University of California, San Francisco, says that lack of interoperability between electronic health records (EHRs) puts the burden on patients to collect and integrate records from different providers, and a recent study showed that the strain of such administrative burdens is on par with financial barriers as reasons for patients to forgo or delay care.

After patients have gathered their records, interpreting them poses an additional challenge. Medical histories often contain dense webs of abbreviations that make them difficult to read. Lisa Grossman Liu, an MD/PhD candidate at Columbia University, sifted through reference manuals and scientific publications to come up with a whopping 104,057 abbreviations commonly used in the medical profession. And each abbreviation may have multiple meanings. For example, Liu found 142 definitions for “PA,” including physician assistant, Pennsylvania and plasmapheresis (a process to filter blood components).

In her research, Liu found many tangled examples that might stymie a reader, including an instance of a sentence constructed entirely of abbreviations: “50 y/o f w/hx b/l SO pw/ LLQP,” which means that a “50-year-old female with a history of bilateral salpingo-oophorectomy presents with left lower quadrant pain.” One of Liu’s proposals coming out of the project is to use natural language processing to build an abbreviation translation tool, which might put doctors’ notes into plainer language.

Liu thinks this tool could benefit doctors as well as patients. Some patients know their medical histories well enough that they can often make correct assumptions about the meanings of abbreviations, she says. Different medical fields, on the other hand, often use different abbreviations, creating the potential to confuse doctors who are trying to communicate with specialists outside their disciplines.

Liu’s translator is just one of the many efforts needed for open notes to achieve the full potential that early proponents envisioned. “April 5 was a significant change for patients in the United States,” says OpenNotes executive director Catherine DesRoches. Now the loose ends of that shift will need tying up.