During my second year of medical school, the university hospital ditched paper charts and bought an Electronic Medical Record (EMR) system. The change was revolutionary — we could search for relevant information instead of flipping through thick binders, we no longer had to decipher other people’s handwriting, test results magically appeared without a trip to the basement lab. I dreamed about the day we would each carry our entire medical history in a thumb drive (USB flash storage was a new thing back then, too).
That day seemed to have finally arrived when a provision of the 21st Century Cures Act of 2016 went into effect earlier this month and patients received complete and real time access to information stored in the EMR. Open up the patient portal on your computer or smartphone, and you’ll see doctors’ notes, descriptions of procedures and reports for bloodwork and imaging as soon as they’re generated. The only exceptions are psychiatric evaluations and materials involved in litigation. Furthermore, you can authorize the EMR to share data with third parties (e.g., other providers, family members, apps and websites).
Both symbolically and practically, full access to our own medical record is a big step toward health self-determination and patient-centered care. It helps keep track of what’s going on with our bodies. How has my cholesterol level changed over time? What exactly was done to me during that three-hour surgery? What’s causing the infection in my foot? Why am I being switched from one drug to another? Understanding the choices made by health care providers makes patients more engaged in the care process, as well as empowering patients to discuss options and alternatives. We can also hold providers accountable by making sure our medical records are accurate and up to date.
Putting medical records in the patient’s hand also facilitates the transfer of care between providers and institutions. We have relationships with multiple providers at different locations, and it’s important for all of them to know what’s happening in a timely manner. Historically, it’s been a logistical nightmare to have one doctor’s office send information to another, but now we can take the information with us wherever we go.
On the flip side, patients may feel bewildered and overwhelmed by so much information. Clinical notes are full of cryptic shorthand and jargon. Knowing that patients will now be reading these documents, providers will need to adjust their narrative style and use more plain language, while being careful not to compromise granularity and precision.
Strikingly, real-time access means patients may see a test result before their providers do. Not able to fully grasp context of the data, patients may overreact, resulting in stress and anxiety, or underestimate the gravity of the situation and take unnecessary risks. Prompt contact between patients and providers will be essential. If you see something that concerns you, don’t hesitate to call or send your doctor a message.
Enhanced health data transparency may paradoxically widen the information gap between groups of patients. Using the system requires devices, internet, and comfort with the technology. Only one-third of patients invited to sign up for online access have actually activated their patient portals. Urban and white patients are more likely to use the portals than rural and Black patients. Most portals are only available in English, presenting a barrier for non-native speakers. Improving digital equity and health literacy will be persistent challenges in the future.
Lastly, easy sharing with third parties raises concerns for privacy and security. Relaying data from the EMR to an exercise or diet app may seem innocuous but it can make you vulnerable to marketers pushing advertisements targeted at your health conditions. The more points of access you grant to your EMR, the more opportunities there are for hacking or stolen data.
In summary, the Cures Act rightfully bestows the ownership of health information to patients, but more data are only useful if we know how to make sense of it, which depends on health literacy and proactive collaboration between patients and providers. Check out HHS.gov/GetItCheckItUseIt to learn more about how you can responsibly access and manage your health information.
Qing Yang and Kevin Parker are a married couple and live in Springfield. Dr. Yang received her medical degree from Yale University School of Medicine and completed residency training at Massachusetts General Hospital. She is an anesthesiologist at HSHS Medical Group. Parker has helped formulate and administer public policy at various city and state governments around the country. He is formerly the group chief information officer for education with the Illinois Department of Innovation and Technology. This column is not intended to substitute for professional medical advice, diagnosis or treatment. The opinions are those of the writers and do not represent the views of their employers.