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Our vision of a national health platform

Transcript

Was wäre, wenn es einen Ort im Internet gäbe, an dem Patientinnen und Patienten die für die eigene Gesundheit relevanten Informationen erhalten, die sie wirklich brauchen? Zum richtigen Zeitpunkt, ohne überhaupt danach zu suchen. Einen Ort, an dem sie vor Desinformation sicher sind, an dem der Schutz persönlicher Gesundheitsdaten respektiert und Datensouveränität groß geschrieben wird.

Einen solchen Ort haben wir im Projekt “Trusted Health Ecosystems” als Vision einer nationalen Gesundheitsplattform entwickelt. Unsere Vision bündelt Produkte qualitätsgeprüfter Anbieter. Dadurch entstehen passgenau zugeschnittene Informationen. Wir nennen das Patienteninformationspfade. Wir laden Sie nun auf eine Erkundungstour durch einen fiktiven Informationspfad ein.

Der Login erfolgt mittels der geplanten digitalen Gesundheits-ID. Das vermeidet aufwendige Registrierungsprozesse und schafft maximale Sicherheit bei der Identifikation. Die Benutzeroberfläche eines Informationspfads erinnert an soziale Netzwerke. Man findet sich im Feed also schnell zurecht. Im Zeitverlauf füllt sich dieser Feed aus unterschiedlichen Quellen mit personalisierten Informationen.

Auf unserer Tour erkunden wir nun den Informationspfad von unserer fiktiven Patientin Katharina Funke. Sie hat Knieschmerzen und erhält von ihrer Hausärztin die Verdachtsdiagnose Kniearthrose. Anders als bei der klassischen Recherche über eine Suchmaschine beginnen Patienteninformationspfade dort, wo Vertrauen entsteht, nämlich in den Behandlungszimmern von Ärztinnen und Ärzten oder anderen Gesundheitsberufen.

In unserem Beispiel hat die Hausärztin Katharina Funke den Informationspfad Kniearthrose empfohlen und ihr einen Link dazu übermittelt. Katharina Funke erhält zunächst grundlegende Informationen zu ihrer Verdachtsdiagnose, die ihr einen allgemeinen Überblick über die Erkrankung verschaffen. In den folgenden Wochen und Monaten wird Katharina Funke unterschiedliche Instanzen des Gesundheitssystems durchlaufen. Von der Diagnostik beim Facharzt über die Entscheidung für eine Operation im Krankenhaus und die medizinische Rehabilitation bis hin zur beruflichen Wiedereingliederung.

Ihr persönlicher Feed versorgt Katharina Funke immer mit den passenden Informationen zu ihrer Erkrankung, zum Versorgungssystem, zu Behandlungsalternativen und zu sozialrechtlichen Fragestellungen. Um den Feed individuell zuschneiden zu können, nutzt das System nach erfolgter Freigabe durch die Patientin oder den Patienten externe Datenquellen, wie die elektronische Patientenakte oder Gesundheits-Apps. Diese Daten liefern wichtige Hinweise zum aktuellen Bedarf. So werden relevante Informationen immer dann angeboten, wenn sie wirklich gebraucht werden. Information und Aufklärung sind dann kein punktuelles Ereignis mehr, sondern folgen einem Prozess.

Daher gleicht kein Informationspfad dem anderen. Die Inhalte folgen dynamisch dem individuellen Bedarf. Und das System bietet auch Informationen an, nach denen Nutzerinnen und Nutzer vielleicht gar nicht gesucht hätten. Wer zum Beispiel Krankengeld bezieht, sollte die damit verbundenen Pflichten kennen, um diesen Anspruch nicht zu verlieren. Sofern die Plattform über Kontextinformationen zur Krankschreibung verfügt, können solche Hinweise rechtzeitig angeboten werden.

Und das System kann noch mehr. Sobald ein neues Medikament verordnet wird, erscheint im Feed die passende Information zum Arzneimittel in Echtzeit. Vorausgesetzt Katharina Funke ist damit einverstanden. Außerdem bietet der Informationsfad immer auch passende digitale Services an. Wer den Hinweis zu einem neuen Arzneimittel erhält, kann im nächsten Schritt das digitale Rezept gleich einlösen. Des Weiteren informiert der Feed Katharina Funke über unterschiedliche Behandlungsoptionen und empfiehlt ihr parallel dazu digitale Zweitmeinungs-Services.

So hilft ihr die Plattform, neu erworbenes Wissen umzusetzen oder in Entscheidungen einfließen zu lassen.

Für die Komposition des individuellen Angebots greift das System auf die Informationen und Services von einer Vielzahl zertifizierter Anbieter zurück. Dazu zählen öffentliche Institutionen und gemeinnützige Organisationen ebenso wie kommerzielle Unternehmen. Das eröffnet den Nutzerinnen und Nutzern eine breite Auswahl passender Angebote und erschließt die Innovationskraft der gesamten Gesundheitsbranche. Falls mehrere Angebote infrage kommen, wird das Angebot angezeigt, das die beste Bewertung durch die Nutzer-Community erhalten hat. Über eine Schubladenfunktion lassen sich die übrigen Angebote jederzeit einsehen und auswählen.

So oder so ähnlich könnte eine nationale Gesundheitsplattform aussehen, die wirklich einen Unterschied macht. Für Patientinnen und Patienten und für das gesamte Gesundheitswesen.

Für die Realisierung einer solchen Plattform bedarf es natürlich einer rechtlichen Grundlage. Und es setzt die enge Zusammenarbeit aller relevanten Akteure voraus.

Mit unserer Produktvision möchten wir all diejenigen inspirieren, die an der Entwicklung einer nationalen Plattformstrategie mitwirken möchten.

Was wäre, wenn öffentliche Institutionen, Gesundheitsberufe, Wirtschaft und Zivilgesellschaft in einem digitalen Ökosystem zusammenarbeiten?

Was wäre, wenn wir die Informationsarchitektur im Gesundheitswesen grundlegend verändern?

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    Trust in digital systems

    Content

    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. This is especially true in the healthcare sector.

    Trust is the foundation on which all interactions and transactions within a digital ecosystem are based. People must be able to trust that their personal data is secure, that information is reliable and that their interests are being respected. But how can this trust be generated? The answer can be derived from the risks faced by users of digital platforms. For example, in addition to the risk of data misuse by platform operators, there are also the dangers of hacker attacks that target personal data, of discrimination and manipulation through nontransparent algorithmic systems, and of unfair business practices. Accordingly, a canon of factors useful in inspiring confidence has emerged. These must be taken into account when building a national health platform:

    • Compliance with data protection regulations and legal standards must be a non-negotiable aspect. Privacy protections and compliance with applicable laws are indispensable for gaining and maintaining users’ trust.
    • Digital platforms must implement robust security measures in order to offer the best possible protection against threats such as cyberattacks and data leaks. In addition, users should be given the opportunity to adjust their own security settings.
    • Information and services should meet high standards of quality and reliability. This includes the involvement of patient organizations and experts in the development and monitoring of the platform (see InfoCure: Making quality visible).
    • Each and every interaction must be fair for all users. Platform operators must ensure that their digital systems are fair, equitable and nondiscriminatory in order to gain and maintain trust over the long term.
    • Transparency is another key factor: Users must be able to understand how their data is collected, processed and used. This also applies to the use of artificial intelligence and machine learning functions.
    • Beyond the technical and legal aspects, communication also plays a key role. Clear information about privacy and security issues will help people better understand the risks and opportunities of using digital platforms, and increase their willingness to place their trust in these systems.
    • The participation of users in the development process can also play an important role in increasing trust in a national health platform. Moreover, including different target groups and perspectives in the development process promotes diversity and inclusion within the digital ecosystem itself.

    In an era of disinformation and conspiracy myths, we need trusted digital spaces where we can get reliable information from trustworthy sources, where data sovereignty is respected and where transparency is a fundamental operating principle. Trust in digital systems can emerge only through the interplay of many different key factors that should play a significant role in shaping a national health platform. All actors involved in the ecosystem need to work hand in hand to strengthen these foundations, together making the platform a trusted space.

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    Alexander Sängerlaub II (K-QM-002-v)

     

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      Without context, everything is nothing

      Dr. Matthias Naab
      Dr. Marcus Trapp

      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. Contextual information thus creates benefits for various areas of our lives. This idea also forms the guiding principle of the concept for a national health platform presented here.

      In the field of medicine as well as everyday life, understanding contextual matters is incredibly useful when it comes to solving specific problems or providing advice to others.  When someone asks us for directions to a particular destination, we need to at least know their current location and the modes of transportation available to them. If someone asks us for relationship advice, it’s important for us to understand the current dynamics of their relationship and situation.

      A look at the world of IT that surrounds us makes this point even more clear. When we interact with software systems that lack context, they often seem limited. For instance, basic versions of search engines, which lack context, provide vast amounts of results.  Searching for “restaurant” thus leads, among other things, to explanatory texts that define the term “restaurant.” While this might be the correct result for certain search intentions, most people query “restaurant” when they want to know which restaurants are nearby.

      When the search engine automatically takes the user’s context into account, the results are suddenly much more meaningful: The user’s current location leads to suggested restaurants in the vicinity. If the software considers additional factors like the time of day or personal food preferences, the results become even more helpful, narrowing down the options to suitable restaurants that are currently open and align with individual preferences. Alternatively, there’s always the option to manually input contextual information, such as the location or the time of the visit.  While such user inputs would also yield good results, they would also increase the effort required.

      Search engines are just one example; there are numerous other software applications that, by incorporating contextual information, provide improved results. Examples include navigation systems that continuously require a user’s current location for reliable guidance, fitness trackers that base recommendations on a full set of observed body metrics, or matchmaking platforms that can only offer promising suggestions when traits and preferences are shared.

      The wide range of software applications operating with the aid of contextual information, and thus delivering value, has ensured that the overwhelming majority of users are fundamentally familiar with them. These users willingly share their contextual factors with the software systems in order to access individually tailored offerings.

      Features that are perceived as intelligent and particularly helpful almost always depend on the utilization of contextual information and fuel the ongoing growth of user expectations. Those aiming to create new successful services thus focus on increasing automation and enhancing user experience by bringing together existing information and contextual data.

      Context is the key to real patient benefits

      A central objective of the national health platform is to provide patients with trustworthy health information and services that are selected and tailored to suit their current health situation.

      The figure below depicts a streamlined image of the national health platform. The platform envisions a process by which information and service offerings are delivered to patients without explicitly incorporating external contextual information.

      The national health platform aims to generate the highest possible benefit for patients by offering reliable health information and services that are as relevant as possible to their current health situation. Achieving this goal would require each patient to manually input the necessary contextual information. This solution is simply not feasible in today’s world, as it would create significant user burdens and thus fail to gain any noteworthy traction.  Nonetheless, patient contexts are essential to determining which information and services are appropriate for a specific individual.

      The core concept of the platform proposed here is to harness contextual information that is already available in other IT systems (e.g., office management systems, electronic health records, or health trackers) for the selection of information and digital services on the national health platform. This would allow patients to determine which contextual information about themselves that originates with other IT sources can be integrated into their pathway and thus foster an improved user experience.  The resulting quality in outcomes could constitute a strong unique selling point for the platform.

      How contextual information leads to specific patient benefits

      Services and information that are provided automatically must be highly relevant to an individual’s situation if users are to embrace them. This is why the national health platform aims to embed information within a structured process of learning and interaction that results in a wide range of personalized patient information pathways (see Discover more, search less – prototype of a national health platform).

      A patient information pathway refers to a tailored-to-the patient course of interaction in which the services and information offered are aligned with a patient’s unique situation. The customized assistance they receive is thus perceived as beneficial. Given the vast range of potential information pathways, it is not immediately clear, exactly, how this type of support can be generated automatically. Even for experts, making appropriate selections from an immense pool of information and service offerings can be challenging.

      The solution lies in a newly created modeling language that enables experts to create pathway models as templates for the information needs that arise during the course of an illness. These pathway models take into account various aspects such as the course of treatment within a specific healthcare system, as well as different phases of disease management and (legal) issues related to benefits.

      Pathway Model Creators

      Developing such pathway models requires the presence of yet another role within the digital ecosystem: that of the pathway model creators. These creators are experts who draw on the typical trajectories of a condition, its treatment and its management to describe the anticipated information needs for a specific symptom. Employing a community approach here can help create an exhaustive and rapidly expanding knowledge base for the national health platform.

      Processing contextual information is essential to the modeling process, as the envisioned trajectory is linked to information needs that can be expected over time. The situations in which patients find themselves, such as having to decide whether to have an operation or not, will determine which health information and services are presented to them. The expertise and experience of a broad range of actors from various scientific disciplines are thus integrated into the information pathways.

      This involvement of an expert community is a cornerstone of quality assurance and generates modeled knowledge that can be verified and explained.  Based on information about a given situational context, the modeled templates are adjusted and expanded over time. The combination of human expertise with technology, rather than the implementation of purely AI-based solutions, should bolster confidence in a national health platform.

      If implemented, the national health platform would generate and utilize millions of automatically personalized patient information pathways. These pathways, guided by the pathway models, incorporate concrete and patient-specific contextual information to select the health information and services offered at any given time. These pathway models, which are loaded with professional expertise and experiential knowledge, thus form the missing piece in the puzzle that makes it possible to provide customized information offerings to patients.


      What is meant by “context,” exactly?

      In this article, so far, we’ve used the term “contextual information” in an abstract manner. However, when it comes to using the term with reference to data and information, there is considerable potential for misunderstanding. On the one hand, the specific nature of the data and information under discussion is rarely specified and, on the other, too little is said about intended uses, emerging benefits and the resulting protection needs.  We therefore elaborate here upon the term “context,” offering clarification.

      The concept of “context” is used in this article to refer to any information specific to a person’s situation that is available in IT systems and can be used to customize offerings to their needs. Contextual information can include, for example:

      • Basic personal variables: e.g., age, gender, weight
      • Patient preferences: e.g., preferences regarding information providers, preferences regarding information attributes (language, comprehensibility, etc.)
      • Health status information: e.g., symptoms, medication use, utilization of healthcare services.
      • Current information: e.g., on “events” such as a prescription for a new medication, being admitted to a hospital, situational moods and current well-being
      • Information about interaction with the national health platform: e.g., articles already read, feedback on articles

      Other types of pertinent information that are not classified as contextual information include reliable health-related information, such as explanatory articles about specific medical conditions. These resources, made available by providers, lack any association with an individual’s personal details.

      Contextual information, in the context of the national health platform outlined here, always serves the direct purpose of enhancing benefits for patients. This objective also informs all efforts to protect this data.

      Contextual information in trusted hands

      In principle, there are a variety of actors in the market that could establish a digital ecosystem and, with the consent of patients, aggregate and process their specific contextual information within a platform. However, each platform operator will certainly bring their own values to the design of their platform. While conceptualizing the national health platform proposed here, we thus emphasized the need to establish a trustworthy institutional structure that handles sensitive contextual information responsibly. (see Successfully establishing health ecosystems – models from abroad)

      Contextual information should always be processed for the sole purpose of delivering better user experiences and improved information and service offerings. This is the core focus of the platform; these pieces of information are therefore not retained indefinitely or used for other purposes. Unless data use has been explicitly authorized for other purposes, the data is only stored for as long as necessary to fulfill its intended purpose.

      Patients should retain full control over how their personal contextual information is used through a dedicated consent system. They should be able, at any point in time, to select or determine which providers and sources of contextual information are used.

      As a whole, the platform aims to create valuable patient benefits and clearly communicate them to all actors in the healthcare sector. The decisive issue here is that the responsible and transparent use of health data can generate welfare effects and individual benefits. Of course, safeguarding personal data is always a priority.

      Context matters

      Context is a critical factor in making software solutions useful and enjoyable. This holds true for all sectors and, of course, the healthcare sector as well. While people have long been enjoying these advantages in many other areas, they often encounter fragmented systems in healthcare that either fail to consider contextual factors or do so insufficiently.

      Offering personalized information tailored specifically to a patient’s needs, patient information pathways enhance the user experience by saving the patient considerable time in finding the information and services that serve them best.

      Authors

      Dr. Matthias Naab and Dr. Marcus Trapp, co-founders of Full Flamingo, an eco-tech startup, aim to leverage the power of the platform economy for the greatest possible impact on sustainability.  Before 2022, they held senior executive positions at Fraunhofer IESE, where they played a pivotal role in developing and overseeing the field of “Digital Ecosystems and the Platform Economy.”

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        Understanding information transfer as a process

        Dr. Sebastian Schmidt-Kaehler
        Dr. Inga Münch

        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. Setting up context-sensitive information pathways could thus offer valuable support and mitigate the losses resulting from scattered information.

        When it comes to producing and providing health-related information, it is often assumed that this information is best transmitted from a sender through a channel to a recipient, who then comprehends the information and converts it into new knowledge. Once a message is transmitted, it can influence an individual’s behavior and decision-making process. However, this sender-receiver model, originating from the 1940s, doesn’t accurately reflect real-world practices. The process of acquiring knowledge is far from a one-time occurrence; rather, it’s a complex and multifaceted learning process that is influenced by various factors.

        One field that is dedicated to the complexities associated with acquiring knowledge and skills is education science. Pedagogy experts have long since questioned simple sender-receiver models and resisted approaches to learning that attempt to forcibly convey or “funnel” knowledge into learners. Instead, the field of education science sees learning as a process in which learners organize knowledge in their unique ways. The acquisition of knowledge and skills is never seen as a one-time snapshot, but rather as an ongoing, manageable process that takes place in equal parts on the cognitive and emotional levels.  This process is best described as a learning path or information pathway, and it provides advices as to which information is likely to be needed at any specific moment.

        “Knowledge can never be transmitted as such from one person to another. The only way an organism can acquire knowledge is by constructing and configuring it for itself.”

        Ernst von Glasersfeld (1987)

        Selective information processing

        Human attentional resources are limited. In other words, we do not consciously absorb and process all of the information that comes our way.  In fact, to capture our attention, information must hold some relevance to our circumstances and correspond with the context in which we find ourselves. This principle holds especially true for health information, as patients go through various phases of illness over time and face shifting informational needs along the way.

        These phases can be described in terms of an individual treatment pathway. The path often begins with acute care and an initial diagnosis, which usually prompts a patient’s need for basic information about their condition. The next phase involves making decisions with regard to treatment and possibly also choosing a specialist for further care. During the rehabilitation or medical aftercare phase, patients typically shift their focus away from diagnostic and treatment procedures, and instead prioritize obtaining information and support on effectively managing and living with their specific condition.

        The findings on the influence of different phases on selective attention can be related to the classical model of coping with illness. According to this model, when a patient is diagnosed with a serious illness, the first phase they enter is one of fear, anxiety and sometimes even denial of the diagnosis itself. This initial shock often leads to anger, followed by despair and a profound sense of personal vulnerability. After passing through a process of inner self-negotiation, the patient enters the final phase in which they accept the illness. The phases described here, as well as the emotions associated with each phase, can play a significant role in how information is received and processed.

        Health information is often generated with the aim of minimizing risky behavior and exerting a positive influence on individual health choices. In the quest to determine which information is important at what moment, one useful tool is the “Stages of Change” model used in the field of health sciences to understand patient behavior. These models postulate that people undergo a process of development involving several different stages on the path to changing their behavior.

        Between the ideal and the reality

        The stages of change models, commonly applied in the realm of health sciences, underscore the significance of employing a well-structured and process-driven approach to information transfer, particularly in the pursuit of promoting informed decision-making and enhancing individual health literacy. These models suggest that patients be offered only information that is actually relevant in each respective phase of illness, coping and care.

        In reality, however, the situation is much different. Patients are often confronted with an overwhelming flood of information from diverse sources, each of varying quality. They navigate through medical consultations, explore search engine results, find themselves lost in information bubbles and social media echo chambers, read pamphlets from health insurance companies, and receive enthusiastic advice from friends and family. This usually takes places simultaneously and without any coordination.

        “Searching for information on the internet is like asking for a glass of water and being served with a fire hose, all the while not knowing where the water is coming from.”

        Michael Scholz (WHO) 2003

        The uncoordinated provision and dissemination of health information as practiced to date lacks promise as a strategy to empower individuals in making well-informed decisions related to their health, particularly in light of the information overload prevalent in our contemporary digital era. In 2019, the National Action Plan Health Literacy emphasized the need for establishing a systematic method of information management that spans the entire course of an illness. Following this thought, the provision of health information should be embedded into a structured learning pathway that meets patients’ needs, depending on the specific situational and support context (see Discover more, search less: prototype of a national health platform).

        Bibliography

        Ajzen I, Fishbein M (1980). Understanding Attitudes and Predicting Social Behavior Englewood Cliffs, NJ.

        Bandura A (1977). Self-efficacy: Toward a Unifying Theory of Behavioral Change. Psychological Review 84 (2). 191–215.

        Becker M H (1974). The Health Belief Model and Personal Health Behavior. Thorofare, NJ.

        Betsch T, Funke J, Plasser H (2011). Denken – Urteilen, Entscheiden, Problemlösen. Berlin.

        Broadbent D E (1958). Perception and Communication. London, New York.

        Kreuter M W, Strecher V J, Glassman B (1999). One size does not fit all. The case for tailoring print materials. Annals of Behavioral Medicine 21. 276–283.

        Noar S M, Benad C N, Harris M S (2007). Does tailoring matter? Meta-analytic review of tailored print health behavior change interventions. Psychol Bull. 133 (4). 673–693.

        Rogers R W (1975). A Protection Motivation Theory of Fear Appeals and Attitude Change. Journal of Psychology 91 (1). 93–114.

        Rosenstock I M (1966). Why people use health services. Milbank Memorial Fund Quarterly 44. 94–127.

        Schaeffer D, Moers M (2009). Schwerpunkt: Bewältigung chronischer Krankheit. Überlebensstrategien – ein Phasenmodell zum Charakter des Bewältigungshandelns chronisch Erkrankter. Pflege & Gesellschaft 13 (1).

        Schaeffer D, Hurrelmann K, Bauer U, Kolpatzik K (Hrsg.) (2018). Nationaler Aktionsplan Gesundheitskompetenz. Die Gesundheitskompetenz in Deutschland stärken. Berlin.

        Shannon C E, Weaver W (1949). The Mathematical Theory of Communication. Urbana, IL.

        Authors

        Dr. Sebastian Schmidt-Kaehler serves as the co-director of the Healthcare Program at the Bertelsmann Stiftung. Before this, he held the position of managing partner at Patientenprojekte GmbH, a consultancy focused on organizational management with a specialization in patient communication. From 2011 to 2015, he assumed the role of national director at Germany’s Unabhängige Patientenberatung (UPD), an independent provider of evidence-based consumer health and patient information. He is also currently a member of the expert committee for the National Action Plan Health Literacy in Germany.

        Dr. Inga Münch studied Public Health and leads the “Trusted Health Ecosystems” project at the Bertelsmann Stiftung.  Most recently, she has been involved in various projects that merge patient-centered care with digital health solutions. Her PhD thesis centered around the concept of health-literate organizations. Through her work on a variety of scientific projects, Inga Münch has conducted research in areas encompassing health education, patient-oriented care and health systems.

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        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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        To contact our project team, please use our form. We look forward to your message and will get back to you as soon as possible.


          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. Given the level of interaction people now have with social media and fake news, there are major challenges where individual decision making is concerned, because good decisions always require good information.

          By selecting and bundling information and service offers, the national health platform should facilitate access to trustworthy offers. The intent is to support patients in making informed decisions and being active and co-productive with regard to treatment processes. A further aim is to improve healthcare overall by creating a digital trust space that guarantees data privacy, data security, and informational self-determination, while also promoting data solidarity in parallel. Our concept for a national health platform is based on these 10 premises:

          01
          Creating trust

          Trust in digital systems and associated responsible institutions within healthcare is limited.  And not without reason, as our health-related data is particularly sensitive. Many individuals are concerned that their data could get into the wrong hands. The digital ecosystem should therefore create an uncompromising level of trust in the areas of data sovereignty, protection, and security. In addition, it is also important to use algorithmic systems in as transparent a manner as possible and to define clear responsibilities in relation to the effects of these systems.

          A central and unique characteristic of the ecosystem outlined here is quality-based selection of information and service providers as well as targeted avoidance of misinformation. The reliability and trustworthiness of the information and services provided through the platform is part of the brand’s essence and, alongside data sovereignty, constitutes an important prerequisite for building trust.

          02
          Promoting health literacy

          The core service in the new ecosystem reacts to empirical evidence on health literacy among Europe’s population. According to surveys, more than half of the population has considerable difficulty finding, understanding, evaluating, acting on, and making decisionsrelated to relevant information on their health. The national healthcare platform should effectively support users in identifying information that is relevant, quality assured, and easy to understand.

          With the aid of data analyses, the ecosystem will be tailored to the user, generate region-based references, and anticipate situational support- and information-related user needs. The information and services provided should not only relate to medical aspects but should also meet the entire spectrum of requirements that arise when coping with illness in everyday life, families, schools, vocational-education and work life, and social and leisure situations.

          03
          Providing benefits

          The success or failure of a platform is closely tied to the size of a community and its rate of growth. Consequently, barriers to participation must be removed and the greatest possible benefits must be provided for patients. This can only happen when these are a focal point of product development right from the start.

          In parallel, where providers of information and digital services are concerned, acceptance of the digital ecosystem must be created. Therefore, the platform must generate benefits and incentives for participating actors while respecting their autonomy. The challenge with regard to the ecosystem’s design therefore lies in generating tangible added value for all sides.

          04
          Strengthening data solidarity

          Through the operation of the platform, new data, data flows, and interfaces arise that serve not only to optimize in-house offers, but also to deliver important information for managing healthcare delivery. Effective use of these data can constitute a strong contribution to improving care and further developing the healthcare system toward a system that learns.

          Such analyses require a high degree of data permeability between the care landscape, research, and systems development. The national healthcare platform is intended to open new options here and provide compliance solutions for sharing data and making data solidarity a reality.

          05
          Taking target groups into account

          The platform concept focuses on the supraordinate patient target group, or on all of the people using the healthcare system. The structure of the platform should be oriented around the target state of healthcare-related participation.  Therefore, it is important to do justice to the high levels of diversity among the different target groups, and, above all, to take into account the vulnerable groups that are frequently affected by or threatened with illness.  This includes people of low socio-cultural and
          -economic resources, migrants, and individuals with chronic illnesses and disabilities.

          In order to do justice to the highly differentiated needs of these groups, alongside provision of multi-lingual access to information, it must be ensured that content is sensitive to culture and diversity. In parallel, through personalized offers, opportunities should be created for adapting information and services to individual preferences.

          06
          Ensuring cooperative product development

          To create and optimal user experience, product development and design should put user needs in the spotlight. This requires systematic assessment of the needs, skills, and desires of different target groups. This can be done through the use of interviews, questionnaires, focus groups, and studies. Even in the process for participatory product development, potential users can play a role in delivering important information for design. Just as important are regularly occurring user tests, based on which products can be continually optimized.

          When involving different user groups, special importance must be given to younger generations, as young people will be the primary users of a digital healthcare system of the future; they should not only be included in the development process, but should also be given the opportunity to actively participate (meaningful youth engagement).

          07
          Making sure no one is left behind

          In spite of all efforts to create a digital offer that is both as user friendly as possible and that has the lowest possible barriers to entry, an effort must be made to include individuals with minimal digital readiness and limited access to digital systems, and to counter reinforcement or even the creation of inequality (digital health divide).

          This can only happen if the barriers between the digital and analog world are fluid: Thus, the benefits and opportunities of the national healthcare platform must be accessible through integration in personal counseling and information services, as well as through other channels, such as in the context of medical treatment; via patient guides; and through institutional services, such as the Independent Patient Counseling Service.

          08
          Institutionalizing sponsorship

          Sustainable financing and institutional anchoring deliver the basis for the implementation of a digital ecosystem and the associated reorganization of the information architecture in healthcare. Therefore, the ecosystem design will be anchored in a model for a legally secure, actionable, and independent support structure. This model will identify different funding perspectives and design an institutional framework for the establishment, ongoing operation, and further development of the digital ecosystem.

          The sponsoring institution should be approved by all participating stakeholders in the ecosystem, and it should remain committed to the interests of patients. Furthermore, it should be taken into account that government information activities are subject to special legal requirements. If necessary, it may be appropriate to have certain tasks within the ecosystem be performed by different companies or bodies and to organize the ecosystem as an umbrella organization.

          09
          Strengthening competition

          In the digital ecosystem outlined here, the in-house creation and provision of information and services is not part of the platform operator’s spectrum of tasks. Rather, the platform offers information and service providers the opportunity to participate in the ecosystem. Efforts must be made to ensure that companies on the market are not excluded or put at a disadvantage. On the contrary, the declared goal should be to tap the innovative power of the European health tech economy for the platform.

          In terms of the data strategy, the national healthcare platform is also expected to make a decisive difference from commercial providers, as it should not aim to achievea monopoly on data. On the contrary, databases and interfaces could be provided by public institutions as part of an open data strategy in order to prevent cutthroat competition.

          10
          Thinking internationally

          We are developing our concept for a national healthcare platform as a prototype for the German healthcare system. Digital transformation is however not a national phenomenon, and it knows no borders. Just the opposite: It merges national healthcare systems into a global healthcare market in which new challenges arise that require international strategies for solutions and collaboration.

          Consequently, we are coordinating our platform strategy with international partner organizations, aligning ourselves with European interoperability standards, and thinking about the international scaling of our platform strategy right from the start. In the long term, within Europe, we envision a merger of national healthcare platforms to a federated platform ecosystem.

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            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. Depending on the search term entered by a user, Google and other search engines can generate hundreds of thousands, or even more, results, leaving it up to the user to determine which “hit” is accurate. Users often aren’t aware that their selection process is influenced not only by objective criteria but also by algorithmic systems that lack transparency, as well as their own emotions.

            The underlying logic of our product vision is different: rather than searching for information, patients discover it. The conventional “pull” principle of search engines gives way to the “push” principle of messenger services, where relevant information is offered at the right moment. Information and education in health care are no longer isolated events, they follow a structured process that considers individual preferences and the contextual conditions of each patient (cf. Understanding information transfer as a process)

            It starts with trust

            Unlike searches conducted with a search engine, the information pathway starts from within – not outside – the healthcare system, that is, in consultation and treatment rooms, and wherever else patients receive personalized support.  After all, trust in the platform isn’t fostered online; it’s built where people have face-to-face interactions. Therefore, our concept envisions that healthcare professionals can suggest or “prescribe” an information pathway through an SMS URL or even directly from a patient’s electronic health record.

            Personal information feed

            When it comes to user verification, our concept intends to utilize the digital health ID provided by health insurers to their policyholders. This approach eliminates the need for complicated registration processes and unnecessary access barriers. Once users log in to the platform, they’re greeted by a user interface resembling those found on major social networks. This has the advantage that users can navigate quickly and effortlessly.

            We’ve named our prototype “LIV,” which stands for the German concepts of “leicht” (easy), “individuell” (individual), and “vertrauenswürdig” (trustworthy). We’ve developed two versions: one optimized for mobile devices and the other for desktop use. Potential future additions include an auditory interface and voice control mechanisms for the information system.

            Similar to Facebook, LinkedIn, and other social networks, the focal point of the interface is a “feed” with tiled posts that accumulate content over time. However, this approach differs significantly from social networks in that it presents users with much less information. The platform’s objective is to reduce information overload while enhancing content quality. Content is thus highly personalized and relies on contextual information to determine the optimal time for delivery to the user.

            For instance, if a new medication is prescribed and the patient has opted in to data-sharing, this contextual information is transmitted to the platform via the electronic health record. Consequently, the information pathway automatically displays relevant information about the medication in real-time. Contextual cues can also come from various sources such as smartwatches, voice systems, or mobile sensors, offering prompts for situational information requirements.

            Integrated patient information

            The information pathways always refer to a specific medical condition, therefore they are created on a disease-specific basis. This tailored approach enables the system to potentially combine various medical conditions, delivering integrated and coherent offerings to patients dealing with multimorbidity.

            As part of our product vision, we’ve initiated an example pathway based on the diagnosis of “knee osteoarthritis.” A fictional user, Katharina Funke, receives an initial, tentative diagnosis, marking the start of a journey through different parts of the healthcare system. This journey encompasses specialized diagnostics, surgery decisions in a hospital, medical rehabilitation, and occupational reintegration. The information pathway starts by providing basic information about the condition, which is followed by details regarding the healthcare system, treatment alternatives and legal issues, as well as information on rehabilitation.

            Prevention pathways

            The concept of information pathways is illustrated in our product vision through the scenario of a knee osteoarthritis diagnosis. However, the basic principle of process-driven information management can easily be adapted to the domain of prevention and can even be tailored to specific target groups and cultural considerations. Applying the principle in this way, healthy behaviors could be practiced and strengthened over time. Particularly vulnerable groups could be reached precisely.

            In creating a personalized pathway, the system draws upon a wide array of information and services from various certified providers, thus offering users a comprehensive selection of suitable options. As a result, the system might encounter several different offerings for a specific information need. In such cases, the highest-rated offering within the user community is presented, and a drawer function allows users to view and select other options.

            Application of new knowledge

            In addition to the information provided, each pathway also presents relevant digital services based on the patient’s needs. For example, when learning about a newly prescribed medication, users can proceed to redeem a digital prescription. Similarly, users receiving information about treatment options are directed to a service for obtaining a second medical opinion. Additionally, information about healthy eating is followed by digital applications featuring cooking recipes and dietary plans. By integrating information and services in this manner, the system helps patients apply newfound knowledge to their lives and health-related decisions.

             

            Linking information with relevant services

            Each information pathway is unique, tailored to dynamic individual needs and encompasses medical, legal, and psychosocial considerations. The system also proactively offers information that users may not have even been looking for. For instance, it can provide information about a patient rights and responsibilities even before issues related to sickness pay arise.

            The system’s user interface and core service could undergo diverse modifications. Regardless of the final design, this product vision demonstrates that a national health platform could yield numerous benefits without having to generate editorial content itself. It showcases the feasibility of bundling valuable information and easing patients’ information management burden. By incorporating a quality verification process for providers, reversing the search engine principle, tailoring information to the user and applying process-driven principles to information provision, we can develop a new format that simplifies how health information is processed, facilitates informed decision-making, and fosters trust in digital solutions.

            Bibliography

            Bol N, Smit ES, Lustria MLA (2020): Tailored health communication: Opportunities and challenges in the digital era. Digital Health, 6, 1-3. (Quelle)

            Kynoch K, Ramis MA, Crowe L, Cabilan CJ, McArdle A. (2019): Information needs and information seeking behaviors of patients and families in acute healthcare settings: a scoping review. JBI Database System Rev Implement Rep, 17(6): 1130-1153. (Quelle)

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            To contact our project team, please use our form. We look forward to your message and will get back to you as soon as possible.