For all the Seinfeld fans out there, I want to journey back to October 17, 1996, to an episode called "The Package." Diehard fans will likely remember this comedic perspective on patients' access to their medical records. Elaine Benes (played by Julia Louis-Dreyfus) visits a physician for a rash. While waiting in the exam room, she sees that someone has written on her medical record that she is a difficult patient. The physician enters the room and tells Elaine she should not be looking at her chart. She confronts him about the "difficult" notation, and he pretends to erase it, to which she responds, "You fake erased." Elaine goes to a new physician and is surprised to find that he has been sent her previous medical record. As he reads it, he immediately changes his attitude toward her, suggesting that he has seen the "difficult patient" note. The rest of the episode focuses on attempts by the cast to "rescue" the chart with the judgmental entry.
Since that episode aired, much has changed regarding patient access to medical records. The Health Insurance Portability and Accountability Act of 1996 (HIPAA), known to most nurses for its rules about patient privacy, also provides people with a legal, enforceable right to see and receive copies, upon request, of the information in their health records. This was followed by the Health Information Technology for Economic and Clinical Health Act in 2009, which, among other things, monetarily incentivizes facilities to enable patient portals. More important, and less well known, is the 21st Century Cures Act. The act's final rule, known as the "Cures Rule," requires health care providers to give patients access to all of the health information in their electronic health records, including physician and nursing progress notes, "without delay" and without charge. As of April 2021, blocking patients from accessing their health records is against the law and can result in fines for hospitals and physicians.
After a recent diagnostic workup for a health issue I was experiencing, I received an email alerting me that my test results had been posted to my patient portal two weeks before my next physician visit. At the visit, the first thing my physician said to me was, "You probably already know the results." My own personal jury is still out as to whether this is good or bad. On the one hand, I had time to process and research the literature about my results. Yes, I recognize that by virtue of my work and education I have the luxury to do this while others might not. I felt this was a good thing. I was well prepared to have an informed discussion with my provider about the results and had decided on my next course of action long before my visit. My satisfaction with any provider visit is determined by how long I sit in the waiting room and how fast I can get out of the office. Because of my advanced preparation and decision-making, I was in and out in less than 15 minutes. On the other hand, I can see where a person without clinical knowledge or support at home might react negatively to information obtained on a portal without the benefit of discussion.
I also recently visited a podiatrist because of a concern about a mole on the bottom of my foot. The mole was insignificant, but while there I noticed that the visit notes were filled with items concerning my foot history that were not stated by me and diagnoses that had not been discussed. Unlike the Elaine Benes encounter almost 30 years ago, I now have a right to review and request modifications to my record, which I will certainly do.
Patient portal access, influenced by the Cures Act, has changed the landscape of patient-centered care and potentially the patient-provider relationship. This issue's AJN Reports describes the unintended consequences of patient portals, many of which I experienced. For me, unintended consequences of portal use include an increase in satisfaction because of less time spent at the visit and being better prepared to make decisions about my health. All nurses should consider this article required reading. Interestingly, in a recent survey of health care providers by Leonard and colleagues (Journal of Medical Internet Research, 2023), most agreed that sharing visit notes, as required by the Cures Act, is a good idea. What do you think: Is sharing caring? Let us know by answering our poll on AJN's social media sites.