Making health information understandable: the COVID-19 patient guideline

Abstract

Abstract Issue Evidence-based practice guidelines offer a reliable source of information, providing recommendations based on the most recent evidence. However, these guidelines are complex and difficult to understand for laypersons. This creates a knowledge gap, affecting shared-decision making, treatment acceptance, understanding of a disease and recommendations of disease prevention. Description of the problem Patient guidelines (PatG) aim to bridge this knowledge-gap by providing simplified versions of practice guidelines in lay language. This is a common practice internationally. An example is the German evidence-based COVID-19 practice guideline, published in 01/2024. In March, a multidisciplinary team, including a patient representative, created and reviewed a PatG outline, prioritising topics based on patient relevance, and discussed relevant information. The authors translated guideline recommendations into lay language, researched additional information, and created supporting graphics. A methodology chapter explaining both guidelines and a short medical term dictionary were also included. Results In 05/2024, the COVID-19 PatG, around 70 pages long, was finalized including information on treatment, diagnostics, intensive care, and support resources. A feedback round was initiated. Comments will be incorporated for the final version to be published in the national guideline registry by end of 05/2024. Updates of the PatG and practice guidelines will occur frequently. Lessons We faced challenges in simplifying medical concepts and interventions and accurately translating recommendations without losing key information. The length of the PatG may discourage readers. Despite these challenges, we are committed to enhancing accessibility, using simpler language, and adding supporting graphics to improve the PatG in the future. Key messages • Despite some challenges, patient guidelines pose as a reliable form of patient information. • The COVID-19 patient guideline is a reliable and evidence-based source of information.