An electronic health record for all? Deaf and hard-of-hearing adults’ perspectives on accessibility, trust and self-determination in Germany’s ePA – a qualitative study
This qualitative study of ten Deaf and hard-of-hearing adults in Germany reveals that while the national electronic patient record (ePA) holds significant potential to enhance healthcare autonomy and continuity, its successful adoption depends on embedding a modular, accessible design with features like sign-language support and granular data control to overcome communication barriers and build trust.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Healthcare relies on a simple, fundamental exchange: a patient describes what is wrong, and a doctor understands enough to help. For most people, this happens through spoken words. But for deaf and hard-of-hearing adults, this exchange is often broken. They face a world where medical information is usually written in complex text or spoken quickly, leaving them isolated from the very care they need. In Germany, the government is rolling out a new digital system called the electronic patient record, or ePA. Think of it as a secure digital folder that holds a person's medical history, available to doctors and the patient, intended to make care smoother and safer. The idea is that if everyone has access to the same information, mistakes drop and treatment improves. Yet, for a community that often relies on sign language as their first language and treats written text as a second language, a digital folder full of medical jargon might not be a solution at all. It could become another wall.
A team of researchers in Berlin wanted to know what deaf and hard-of-hearing adults actually thought about this new system. They did not just send out a survey; they sat down for deep conversations with ten adults from across Germany, ranging in age from 35 to 76. These interviews were conducted via video call, with the help of qualified sign language interpreters, to ensure the participants could speak freely in their preferred language. The researchers asked about their past experiences with doctors, what they knew about the new digital record, and what they feared or hoped for regarding its future use. The goal was to understand if this technology would help them take control of their health or if it would simply add more confusion.
The conversations revealed a stark reality: for these participants, accessing healthcare is currently a struggle defined by communication. When they visit a doctor, their ability to understand a diagnosis or explain a symptom often depends entirely on whether a professional sign language interpreter is present. Without one, they resort to writing notes on their phones, lip-reading, or relying on family members to translate. While family members can help in a pinch, the participants described this as risky and emotionally draining, especially when discussing serious or sensitive health issues. They emphasized that a doctor should look at them, not just at the interpreter, to treat them as the patient they are. This dependence on others for basic communication creates a barrier that makes healthcare feel fragile and uncertain.
When the researchers asked about the new electronic patient record, the answers were surprisingly quiet. Most participants had heard very little about it. The information they had received was often just text on a website or a letter in the mail, which they found difficult to understand. One participant noted that they only learned about the study because of an email, while others admitted they had never heard of the system at all. This lack of knowledge was not because the participants were uninterested or bad with technology; in fact, many are very skilled at using digital tools to navigate a hearing world. The problem was that the information about the record was not presented in a way they could access. It was written in complex language, full of medical terms that required a dictionary to decode, rather than being explained in plain words or shown in sign language videos.
Despite the confusion, the participants saw a genuine potential in the system if it were built correctly. They imagined a future where they would not have to repeat their medical history to every new doctor they saw. They hoped the record could act as a "common thread," connecting all their treatments and medications in one place. Crucially, they wanted the record to include a clear note about their hearing status and communication needs. If a doctor could see before an appointment that a patient is deaf and requires an interpreter, it would save time and prevent the frustration of starting a conversation that cannot be understood. This visibility, they felt, would restore a sense of autonomy and safety.
However, this hope came with deep concerns. The participants were wary of who could see their private health data. They distinguished clearly between a doctor who is treating them and other groups, such as insurance companies or researchers, who might access their files without a direct need. For some, this fear was rooted in a painful history. They recalled how, in the past, data about deaf people was used to justify persecution and forced sterilization under the Nazi regime. This historical memory made them especially sensitive to the idea of their data being collected and categorized without their full control. They insisted that trust in the system would only come if they could decide exactly who saw their information and if they could understand the information themselves.
The researchers found that the solution was not to add a single feature, like a sign language video, and call it done. Instead, the participants asked for a flexible system that offered choices. They wanted the option to see medical documents as sign language videos, with subtitles, in plain language, or with explanations of difficult medical terms. They wanted to be able to switch between these formats depending on what they needed in that moment. They also demanded support that could speak their language, meaning customer service that could communicate directly in sign language without forcing them to use a third-party interpreter for sensitive health questions.
The study concludes that the success of this digital health record for deaf and hard-of-hearing people does not depend on their ability to learn a new system. It depends entirely on whether the system is designed to meet them where they are. If the record remains a wall of complex text, it will exclude them just as effectively as a lack of an interpreter does today. But if it is built with choices, clear explanations, and the ability to document their communication needs, it could become a powerful tool for independence. The researchers suggest that for the system to truly work for everyone, accessibility must be woven into its design from the very beginning, ensuring that the promise of digital health is kept for all patients, regardless of how they hear or speak.
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