Recent regulations from the Office of the National Coordinator for Health IT (ONC) and Centers for Medicare & Medicaid Services (CMS) have, respectively, focused on prohibiting information blocking and increasing price transparency. Together, these two regulations have put a third issue into the spotlight as well: Reducing the complexity of clinical terminology.

If organizations present medical records, cost data, and descriptions of billing codes to patients without providing context or stripping out medical jargon, then the information is potentially subject to regulatory penalties. It’s also of little benefit to patients who had hoped to use the information to manage their health or search for medical services.

That means providing more patient-friendly terminology is more than just a compliance checkbox. Increasingly, it’s a competitive differentiator – and it can help drive clinical improvements.  The challenge is to provide this more patient friendly vocabulary, without losing the fine detail and complexity necessary to provide the best care.

The regulatory push for increased access

Three regulations that have gone into effect in the last three years have shed light on the federal government’s push to provide patients with access to information.

Two rules from CMS require price transparency and easy-to-read information from providers and payers. As of October 2020, most health plans are required to disclose costs in a machine-readable format that also includes descriptions of typically cryptic billing codes in plain-language descriptions. Likewise, as of January 2021 hospitals must share prices online and provide plain-language descriptions of available services. The message here is clear: Patients need to know what they’re paying for.

In addition, there’s the 21st Century Cures Act Information Blocking Rule. Initially applied to a narrow definition of electronic health information, in October 2022 ONC expanded the scope of the rule to cover all clinical records used to make clinical decisions, including imaging scans, lab test results, and unstructured clinical notes. This rule also has a clear message: patients have a right to access their medical information so they can make more informed decisions.

Access and accessibility aren’t the same

All three regulations have good intentions, but they unfortunately demonstrate an all-too-familiar refrain in healthcare. Access to information is one thing, but accessibility is another.

Take the information blocking rule, which doesn’t indicate how information should be presented to patients. An organization can comply with the rule by sharing images or notes directly in an electronic health record (EHR) patient portal, but there’s no requirement to explain terms like ureterolithotomy or indicate that impressive radiology is, in fact, a negative outcome.

Taking that step is no small feat. It would require writing plain language descriptions for roughly 55,000 LOINC terms, 68,000 ICD-10 diagnostic codes, 100,000 CPT codes, or 300,000 SNOMED terms – and then mapping each description to the applicable term. Given the resources required, it’s no wonder that few organizations have done this work.

Unfortunately, this is a misstep. When patients receive information that’s filled with clinical jargon and lacks explanation or context, they all too often turn to the internet, where they’ll find resources that are easy to understand but potentially contradictory to what their providers said – or just plain inaccurate.

Solving this problem requires a two-pronged approach to health literacy. The more obvious need to address is personal literacy, which is an individual’s ability to comprehend medical information. There’s also organizational literacy, which refers to how well a health system or health plan enables individuals to understand that information. Improving both types of health literacy by committing to use patient-friendly terminology not only increases access to information but makes it understandable and accessible to all patients.

The benefits of patient-friendly terminology at scale

Health systems shouldn’t limit their increased use of patient-friendly terminology to the information they’re required to share under the information blocking rule. A wider effort to introduce plain language throughout the organization – in everything from websites to educational resources to wayfinding signs in the hospital – demonstrates a commitment to clarity that offers benefits to many stakeholders, such as:

• Patients are more likely to understand a diagnosis or treatment plan and properly prepare for an inpatient procedure. They are also more likely to pay a bill on time if they know exactly what they owe before they go to their appointment.
• Providers can devote fewer resources to answering phone calls or responding to emails from patients who have simple questions. Patient-friendly terminology also contributes to an improved member experience, which in turn improves patient retention.
• Payers also benefit from a member experience boost, as there’s less confusion about Explanation of Benefit statements, bills, and overall insurance coverage.

Making patient-friendly terminology accessible at scale is admittedly a tall order given the sheer number of procedural and billing codes that require rephrasing. However, it’s a worthwhile endeavor not just for regulatory compliance but also for improving clinical outcomes and standing out in an increasingly competitive marketplace. Working with a vendor that specializes in mapping clinical terms to standardized code sets, will position organizations to seamlessly connect medical terminology to patient-friendly terminology and provide a better, more informed experience for all.

Photo: Tajuddin Molla, Getty Images