“Doctor knows best” is a saying from the past, and the evolution of healthcare is proof. Patients are no longer passive bystanders but active participants in their own health care. Or at least they try to be.
In an attempt to give patients the power to control their own health information, the United States government implemented the Final Rule of the 21st Century Cures Act in April 2021. This law mandated that all health care organizations give patients full access to their electronic medical records. From notes to lab results, and pathology reports, patients now have access to it all. And it’s instantaneous. As soon as those lab results are processed and finalized they’re available for patients to view. It sounds great, doesn’t it? All your health information is right at your fingertips.
But what about the nine out of 10 adults that have difficulty understanding and using health information? According to the Centers for Disease Control and Prevention (CDC), personal health literacy levels in the United States are significantly low. What’s the point of having access to all your health information if you cannot understand or use it? And what about the patient anxiously awaiting biopsy results, who receives a notification that their pathology report is back which includes phrases such as invasive carcinoma, positive margins, or regional lymph node metastasis? No patient should have to find out they have cancer by struggling to interpret a complex pathology report designed for medical professionals. Yet, it’s happened.
Health information aside, what about the technology piece? Not all patients have the resources or means to the technology required to access their information. Sixteen percent of adults in the United States are not digitally literate, or tech-savvy as some call it, and have difficulty navigating smartphones, tablets, and computers.
Without a doubt, health care consumers have every right to access their personal health information, and they definitely shouldn’t have to pay for it. But the rollout of this mandate was untimely. Because of the overworked and overstressed state of our health care system, amidst the COVID-19 pandemic, important details were overlooked, and vital steps were skipped. The kinks involving the release of sensitive information, such as pathology reports confirming cancer, are still being ironed out and the technology aspect should not be overlooked. However, the most critical oversight of them all is health literacy, or rather, lack thereof.
In August 2020, the definition of health literacy was changed to include both personal and organizational health literacy. Personal health literacy is not only one’s ability to understand health information, but the ability to find, and use this information to make informed health decisions. Organizational health literacy is the extent to which organizations equitably help individuals develop their own personal health literacy. Navigating, interpreting, and understanding medical records requires a level of personal health literacy that many people in the United States do not possess. So why would we give patients full access to their medical records before first addressing health literacy? These new definitions emphasize the fact that health literacy is not an individual problem, but a systemic one, and until we improve the overall health literacy of our population, the majority will not be able to access or use their personal health information as intended.
With that said, this mandate is here to stay, and health literacy will not improve overnight, so what can we do in the interim? For patients, it is extremely important to understand that the notes and reports that go into your chart, are written for other medical professionals. This information tends to be riddled with complex language and unfamiliar terms, so if you need help interpreting it, please ask your health care provider for clarification. For providers and organizations, it is imperative to acknowledge the deficits that accompany limited health literacy and take the time to identify the specific learning needs of your patient population. Empowering patients and promoting national health equity begins and ends with health literacy.