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Vision

Imagine a space on the internet for patients that is free of disinformation and where the protection of personal health data is respected. Imagine a situation in which patients receive the right information at the right moment, without having to search for it.
As part of the “Trusted Health Ecosystems” project (www.trusted-health-ecosystems.org), we are charting the way forward for a tailored-to-healthcare platform strategy and developing a product vision for a prospective national health platform in Germany. In line with our vision of a trustworthy information architecture, we have outlined a core service that makes it easier for patients to navigate information and which could generate significant benefits.

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Our Vision

Our product vision for a national health platform is rooted in the idea of establishing a trustworthy information infrastructure within the healthcare sector. Challenges such as the anonymity of the digital space, security risks, “hallucinating” language models, and the spread of misinformation have eroded trust in digital systems. It is therefore all the more important to create trustworthy environments where reliable information is accessible, and privacy is respected. The contributions in this section explain how trust in digital systems can be cultivated and highlight the core principles, values and guiding visions that have informed our concept.

Trust in digital systems
Behind our vision of a national health platform is an overarching value: trust. Data misuse, nontransparent algorithms, increases in cyberattacks, disinformation, and the unresolved question of how the digital environment should be regulated and controlled are together creating a profound crisis of confidence that is shaking the foundations of our society in many areas of life. Yet trust in digital ecosystems is critical to ensure their successful design and long-term existence.

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Objectives and conceptual premises
At the center of our vision are patients and anyone using the healthcare system. In the course of the digital transformation process and of bio-technological advancements, users will be confronted with an increasingly broad spectrum of treatment options, a growing number of entities, and new technologies. The number of decisions that need to me made increases with the complexity of the system, and alongside options for participation, personal responsibility also increases.

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Patient Information Pathways

Acquiring new knowledge is a complex process. In fact, we process and remember only a fraction of the vast quantity of information we encounter every day. As patients navigate their way through the healthcare system, they must filter, process, categorize and assess a lot of information from diverse sources. Their information needs also evolve over the course of time and treatment. To address this challenge, we have designed a new format that embeds the communication of information into a process that takes contextual factors into account.

Without context, everything is nothing
Patients seeking medical assistance are usually required to answer several questions about their medical history. Physicians ask these questions to narrow the scope of possible diagnoses. This process, referred to as anamnesis, is an integral part of any medical diagnosis, and the contextual information it contains helps treating physicians or clinicians determine an appropriate treatment as a next step.

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Understanding information transfer as a process
Many health information providers have good intentions. They strive to have a positive impact on the individuals health behaviour, assisting them in managing illnesses and making crucial treatment choices. However, in today’s digital age, a significant portion of this well-intentioned information fails reach its intended audience, who find themselves inundated in the ever-growing flood of information in the ongoing struggle for their attention.

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The Prototype

To illustrate our product vision, we have created a prototype of the patient user interface. Incorporating the look and feel of major social networks, the application is based on a “feed” mechanism that is gradually filled with content. Users are provided pertinent information at the right time that is also linked to relevant services. The system relies exclusively on curated information and distills data to its essentials. It presents this data chronologically and prioritizes meeting a patient’s specific information needs.


Discover more, search less – prototype of a national health platform
The core service of the national health platform outlined here is to provide personalized information pathways that adapt to changing information needs and have the capacity to facilitate the handling of health-related information. To illustrate our concept, we have developed a prototypical design that shows what this platform might look like one day. Increasingly, patients are using the internet to gather information from sources beyond the traditional healthcare system. Currently, they rely primarily on major search engines for this task.

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