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Conceptual considerations: an overview

Our vision of a national health platform foresees a trustworthy information architecture within the healthcare sector that aims to streamline the management of health-related information and render top-tier information and data more readily available.  This contribution offers a bird’s eye view of the digital ecosystem we’ve envisioned and outlines the key stakeholders, roles and processes involved.

The core service provided by this ecosystem is a customized compilation of quality-assured information and services that are tailored to individual information needs over time (see Discover more, search less). This service helps ensure that patients receive information that is pertinent to their needs when they need it. By consolidating a variety of content from accredited providers, the platform curates trustworthy information and services. Tailored to users’ individual contextual factors, the curated information and services are further refined to cater to specific situational support requirements (see Without context, everything is nothing).

This process-driven guidance, coupled with tailored-to-the user information and service offerings, not only fosters well-informed decision-making but also advances health literacy, thereby making a substantial contribution to personal health management (see Health literacy and infodemics). However, making this product vision a reality requires more than simply providing a technical platform equipped with algorithmic systems. Above all, it requires the constructive, collaborative engagement of the full array of relevant actors and players. Collectively, they constitute the digital ecosystem in which the national health platform operates. They target shared objectives and benefit from the rewards of their collective engagement (refer to Benefit model for a national health platform).

 

Brokering trustworthy health information and services

A key element of the platform centers on the curation of information and service providers, as well as the brokering of trustworthy health-related information and service offerings. The platform is not designed for the creation of original content. The platform does not engage in generating original content; rather, it excels at cultivating an ecosystem wherein the platform’s initiator and operator do not shoulder the sole responsibility for developing all functions and services. Instead, their focus lies in establishing the framework that empowers partners to seamlessly integrate their services and applications into this ecosystem. Thus, the platform does not autonomously produce content and offerings; rather, it functions as a broker for context-specific health information and services.

This “brokering principle” revolves around the role of an intermediary that bridges supply and demand. The “broker” provides the infrastructure and delivers a user-friendly interface, thus facilitating interaction between the two sides. Such platforms often include rating systems, offer recommendations, or contribute to personalized offerings. We’ve applied this approach in our blueprint for a national health platform. The platform thus acts as a broker, connecting providers of health information and digital services on one end with patients on the other. By tailoring the presentation of available options to align with a patient’s specific requirements, the platform enhances its brokering service.

Platform operator

As a central figure within the digital ecosystem, the platform operator shoulders a range of responsibilities to ensure the seamless operation of the platform. This encompasses the provision of essential technological infrastructure, including software, servers, databases, networks, interfaces, and an array of technical resources. The tasks of a platform operator further encompass delineating platform regulations, fostering connections among participating entities, promoting interactive engagement, establishing a trustworthy space of interactions, and ultimately, expanding and scaling both the platform and the encompassing ecosystem.

Given this diversity of tasks and the anticipated scope of the digital ecosystem, the platform operator faces substantial demands. It is imperative that the governing body maintains independence and secures the acceptance of all participating entities. Moreover, it’s crucial to recognize that governmental institutions have limitations, as information activities administered by the state are bound by specific legal prerequisites (see ). Thus, to ensure legal clarity, it is advisable to establish a platform that is rooted in civil society and which is not administered by the state.

In the case of the national health platform, it seems advisable to delegate specific tasks within the ecosystem to distinct entities or bodies, conceptualizing the ecosystem as an overarching organization. Effectively managing the governance and operations of this digital ecosystem could involve distributing responsibilities across various organizational units to accommodate the complexity and diversity of roles, functions and tasks. All participating organizations could then be brought together under a non-profit and independently funded holding structure (see Ownership: Public or private?).

 

 

Information and service providers

To consolidate a diverse array of offerings on the platform and harness the innovative capabilities of various stakeholders, the ecosystem should remain open to state-run, civil society and commercial information and service providers, whose role involves contributing their offerings and thus breathing life into the platform. Relevant offerings include not only conventional information portals but also digital services, such as those that allow patients to schedule doctor appointments or locate specialists.

A prerequisite for participation in the ecosystem is meeting clearly defined quality requirements that must be demonstrated at the provider level. Our concept thus envisions a certification procedure that focuses on both structural and process quality (see ).  All providers with a valid certificate can add their information and services to the ecosystem. The result is a trustworthy pool of information and services that have been sourced exclusively from verified providers.

Pathway Model Creators

Searching for trustworthy health information is often no less difficult than looking for a needle in a haystack. The challenge for patients lies in filtering out the information that is truly relevant to their specific situation. The national health platform can provide assistance in this regard by providing personalized information with exceptional precision that is embedded within a structured learning and interaction framework known as a Patient Information Pathway (see ).

Within these information pathways, platform users receive customized information and service offerings that are tailored to their specific phase of illness, coping and care (see ). These pathways follow condition-specific patterns or pathway models.  While basic condition-related information is provided with the initial diagnosis, subsequent stages frequently entail assessing specific treatment options. Particularly in the case of chronic conditions, managing the illness often becomes the focal point of attention.

By following such patterns, the anticipated trajectories of information needs can be modelled for a variety of conditions. These models can be used to automatically structure information in chronological order, which allows patients access to information they might not have actively sought. This could include pointing them toward legal and social matters relevant to their specific treatment phase.

In addition to providers, the ecosystem also needs pathway model creators to design pathway models. This role requires having the expertise to define templates for information and support needs and could be taken up by various decentralized actors, such as professional societies or patient advocacy groups.  These actors can help create a large number of pathway models in a very short period of time.

Providers of contextual information

While templates structure information, they do not account for where patients stand along their timelines, potential supplementary information needs, or decisions to be made during a course of treatment. Information needs can vary substantially and depend on factors like whether a patient has opted for surgery or a more conservative treatment.

In order to provide a truly tailored-to-needs set of offerings and create customized information pathways, pathway models must be adaptable to changing contexts. This could involve using periodic self-reported input from users. However, extensive data collection of such inputs is inconvenient for users, often impractical, and raises the spectre of the search engine problematic. But how can the platform “know” what information its users need in a given moment?

The key to delivering a personalized offering lies in factoring in a wide spectrum of contextual information that can be easily and automatically obtained with the individuals’ consent (see ).  Providers of contextual information thus form the third relevant group of actors within the digital ecosystem.

Potential sources of pertinent contextual information include electronic health records, which, within an advanced Telematics Infrastructure 2.0, could provide vital insights into the situational information needs of patients. Similarly, the management systems used by hospitals and physicians’ offices, as well as digital health applications or fitness trackers, could serve as sources in this regard.

Contextual information is already present in digital systems and would no longer need to be captured through a separate process. Leveraging these resources within the digital ecosystem to personalize health information and services creates a clear benefit for patients by mitigating information overload while improving the quality of information provided.  Contextual information can also be used to proactively inform patients, remind them of tasks, or tailor how information is presented to align with individual preferences.

High-quality collaboration

A truly user-centered offering can only come to fruition through the collaborative interaction of different types of participants. Providers of information and services, creators of pathway models, and providers of contextual information each bring a crucial element to the functionality of the ecosystem. Just like the pieces of a puzzle, their contributions fit together, creating added value as a whole.

In order to instill user trust, the platform must adhere to stringent quality standards. However, given the platform’s openness to a vast number of participating entities, meeting these standards is far from straightforward. A key aspect of quality management is rooted in the aforementioned certification of information and service providers (). Yet, this alone falls short, as ensuring quality must extend across all processes within the ecosystem. Pathway model creators and contextual information providers must also meet clear quality or qualification standards that align with their respective roles.

LIV – An easy to use, personalized and trustworthy user interface

The synergies created by the variety of actors participating in the national health platform are expected to create significant and tangible added value for patients. Regarding products, there are likely numerous pathways through which these synergies can materialize. To facilitate a shared understanding of what our product vision entails, we have articulated in detail one such pathway and developed a prototypical design that showcases what the national health platform might look like from the patient viewpoint (see Discover more, search less – prototype of a national health platform).

Our concept envisions a platform with a user interface that is tailored specifically to the patient’s needs and is available as an app as well as a website. We’ve named the interface “LIV,” which stands for the German concepts of “leicht” (easy), “individuell” (individual), and “vertrauenswürdig” (trustworthy). LIV is designed to provide optimal support to patients, both proactively and during targeted searches. It’s primary design principle is to mitigate information overload while offering only high-quality information and services. The content provided through LIV is thus highly personalized, and the timing of its delivery is driven by contextual information.

If implemented, LIV would be available to millions of people and thus the national health platform’s most visible component. However, the platform would require additional components in order to facilitate seamless interaction among the various groups of actors. For example, the platform would need more user interfaces for ecosystem participants that would allow them to register new health information and services or to create templates for patient information pathways. Integration interfaces would also be needed to connect other IT systems, such as those used by context providers (cf. Initial thoughts on the technical structure of the national health platform).

Find, understand, appraise and apply

The twin goals of our product concept for the national health platform are to streamline health information management and promote health literacy. Health literacy involves having the skills to find, understand, evaluate and apply health-related information. Research suggests that digital information overload poses a challenge to nearly half of the European population. The core service of the national heath platform we’ve conceived addresses this concern and operates across all four levels of health literacy.

Find: Users no longer have to actively seek out pertinent information. Instead, relevant content and services are proactively presented to them. This shift from a “push” to a “pull” communication model offering personalized information streamlines search efforts, preventing users from becoming lost in the sea of information.

Understand: The ecosystem defines minimum standards for content clarity and digital application usability. In addition, the complexity of texts can be determined automatically. Users can then select information that is suited to their (self-reported) level of health literacy.

Appraise: A cornerstone of the ecosystem is the quality-centric selection of providers of information and digital services. As part of the proposed national-level certification process, providers would be audited at regular intervals. This helps create a trusted space for patients in which the risk of misinformation and data misuse is mitigated.

Apply: Information gains practical relevance when it leads to actionable decisions. The personalized compilation of information and digital services makes it easier for users to modify their behavior, make informed choices, and translate knowledge into practice.

Additional benefits of the national health platform

In addition to its core service, the concept of a national health platform harbors several opportunities to create additional benefits and engage more actors in the digital ecosystem:

  • Distribution partners: The quality-assured health information and services available on the national health platform could be distributed through alternative channels. These distribution partners might encompass other platforms that specialize in delivering health-related content and services. Other candidates include digital health applications that require curated information and directly integrate it into their solutions.
  • White-label solutions: In principle, LIV could potentially be provided as a white-label patient interface. Interested partners could incorporate this application into their own offerings and infuse it with their branding. Such a move would further amplify the reach of LIV.
  • Anonymized data for research: The national health platform processes data that not only benefits patients directly but could generate additional value. By means of aggregated analysis, the provision of fully anonymized data or creation of synthetic data sets, the platform could make a valuable contribution to health services research.
  • Internationalization: Although conceived for a national setting, the envisaged health platform has the potential for international scalability. Despite differences in healthcare systems, the platform’s principles, roles, and even software could be adapted to suit other national contexts. Over time, an international network of nationally anchored platforms might materialize in which each network adheres to shared standards, exchanges insights and data, and thereby contributes to establishing a global infrastructure of trust.

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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.”

    Your feedback is important to us

    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.