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Initial thoughts on the technical structure of the national health platform

Dr. Matthias Koch

The software architecture of a digital platform illustrates its structure, but also offers information regarding expected costs and the technical feasibility of certain requirements. In the case of the national health platform outlined here, the architecture will follow the basic pattern of other intermediary platforms, but can be elaborated in detail only once all requirements necessary for implementation have been defined and all open questions conclusively answered. During the concept development stage, some questions were deliberately left unanswered so as to provide flexibility and avoid building any premature decisions into the process. However, the conceptual decisions already made, along with the determination of roles and tasks of the platform in the digital ecosystem, make possible an initial overview of the required components and their interactions.

Based on the preliminary conceptual considerations (see Conceptual considerations: an overview), system boundaries can be identified that clarify what lies within the scope of the national health platform, as well as which directly neighboring systems are to be connected via interfaces. However, the considerations described here do not represent an implementation-ready software architecture that already encompasses all relevant architecture drivers and technological aspects. Their identification and refinement will be the subject of further conceptual work.

Participating ecosystem actors

The focus here is on the national health platform as a technical backbone brokering context-specific digital health information and services. The platform has the task of providing the essential functions needed to manage users and content. It also constitutes the technical link between the various ecosystem actors. Apart from the platform operator, these actors include:

  • Providers of health information – for instance, information on diseases, prevention, health care structures and so on, in various formats.
  • Providers of health-related services – for instance, online appointment scheduling, hospital search tools, pain diaries, etc.
  • Providers of contextual information – personal information that provides clues regarding patients’ situational information needs.
  • Developers of pathway models – indication-specific templates describing the expected trajectory of informational needs, along which specific health information is presented to individual patients as it becomes relevant.
  • Patients

The platform and its interfaces

The core task of the national health platform is to relay health information and health-related services to the right people at the right time. This will usually be triggered by events, for instance a visit to the doctor or the expiration of a time period such as “six weeks after taking sick leave.” Such events will in turn be derived from incoming contextual information, which triggers the national health platform to deliver the appropriate information and services to patients along one or more currently relevant pathway models (see Conceptual considerations: an overview). This core functionality of brokering health information and services requires a number of interfaces, which are presented below:

  • Interface for the inclusion of health information: This interface makes it possible to store health information on the platform so that it can be associated with patients’ situational informational needs based on certain characteristics and made available in a personalized feed (see Discover more, search less – prototype of a national health platform). In addition, this information can be retrieved via a semantic search.
  • Interface for the inclusion of services: The inclusion of services is analogous to the inclusion of health information. Services are also made available to patients on a situational basis.
  • Interface for the inclusion of individual contextual information: The transmission of individual contextual information about patients requires interfaces that allow for automated communication between systems. The exchange of data via these interfaces takes place exclusively on the basis of patients’ differentiated consent, as given to the provider of this contextual information; this could include the electronic health record (ePA) or various providers of fitness and health data. At the interfaces for the transfer of contextual information, the platform can check whether user consent has been given before allowing the transfer to take place. Different contextual information from different providers may require customized interfaces in each case, with the national health platform subsequently harmonizing the incoming data.
  • Interface for managing pathway models: The templates are created via a graphical user interface and stored on the platform. The same interface can be used to manage, revise and improve pathway models. Likewise, it facilitates collaborative modeling involving multiple creators.
  • Interface for patients: Patients access the functionalities of the national health platform via a graphical user interface – for example, in the form of a website or app for mobile devices – most typically to obtain health information or access health-related services. Additional access methods other than this traditional interface can be used, especially voice-based user interfaces. Patients are authenticated via the healthcare-sector digital identity planned for inclusion in the Telematics Infrastructure 2.0, which ensures that all data can be associated reliably with specific patients, and accessed only by them.

 

Interface for the inclusion of health information

Health information is made available by certified providers by means of a dialogue-based process. This helps the various providers submit their information to the platform in such a way that it can be linked to pathway models and displayed to patients or found by them via a search. The actual content – such as an informational text or a video – is not transferred to the platform in this process, but remains with the provider. Instead, a link is created and enriched with metadata such as the date of creation or the sources used.

The health information is transmitted to the national health platform through the previously mentioned interface. This interface can be implemented in two forms. On the one hand, the platform itself can provide a graphical user interface. This website or application would be usable by health information providers, and would support them in submitting their information and entering all the necessary details.

On the other hand, this interface can also be designed to accept data from other systems without any active intervention by users. This requires supplementary interfaces on the part of the health information providers, specifically in the content management systems within which the information is originally prepared. These systems transmit authorized information to the platform. This has the advantage that providers do not have to engage with an additional system, and can remain in their familiar working environments.

Interface for the inclusion of health-related services

Health-related services are handled similarly to health information. This means that certified providers will be given support in linking their services to the national health platform. As with the health information, the services are not transferred completely to the platform. Rather, a linking strategy is used: The platform receives a reference to a service, including descriptive metadata, in order to display this to patients along a pathway model.

Interface for the inclusion of individual contextual information

Throughout the healthcare system, various actors accumulate contextual information that sheds light on patients’ situational information needs. Capturing this in a uniform format aligned with existing standards is critical to the success of the national health platform. I will discuss one such possible standard below. The basis for this uniformity is the interface specified by the platform, through which third-party systems transmit data. Currently, the most important data provider is Gematik, the state digital agency, which bundles all the data that doctors’ practices, pharmacies and clinics pass on via their various administrative systems in the form of the electronic health record.

The interface should allow the integration of other sources of contextual information in addition to the electronic health record. This could include health insurance companies or health data platforms such as Google Health or Fitbit, for example. Assuming that patient consent has been secured, the various actors would transmit this data to the national health platform. Since the exact formats of the data from the different providers are not yet known, it is likely that different types of interfaces will be offered for various groups of providers. As a result, the data may subsequently be harmonized on the national health platform.

The interface outlined here is utilized by a number of systems. It is not used by patients themselves, and does not provide a graphical user interface, since individual contextual information is automatically generated and transmitted by the information providers. In the absence of automation, it would not be feasible to keep such a large quantity of data sufficiently up to date. Nevertheless, this interface must also contain authentication mechanisms, thus ensuring that only authorized systems can transmit their data to the national health platform.

Interface for pathway model management

Creating models for patient information pathways requires expertise regarding the trajectory of patient informational needs and knowledge of the typical stages of a disease. For this reason, the templates are created exclusively by certified actors (see Conceptual considerations: an overview). At the same time, pathway models are expected to be complex, making it useful to have a visualization. The graphical user interface for interacting with pathway models will be accessible on the national health platform to appropriately certified stakeholders or their institutions.

 

Interface for patients

Finally, we consider the perspective of the patients, who are presented with relevant health information and services based on their individual contextual information. They use the platform’s user interface to access the digital ecosystem in order to obtain information and services relevant to them along pathway models or – based on their individual needs – to search for information and services of verified quality. In addition, to ensure respect for data privacy, patients are given the ability to control how their data is used. This can be done via a privacy dashboard, such as the one being developed and tested in the D’accord research project (https://daccord-projekt.de).

Patients are authenticated via the digital identity provided for in the Telematics Infrastructure 2.0. This authentication facilitates the link to personal data from the electronic health record, which could serve as a primary source of contextual information, especially at the outset. In addition to this avenue of access, other mechanisms can be created to engage patients in the digital ecosystem. For example, authorized service providers might send SMS text messages that allow for direct links to the national health platform’s user interface.

Further conceptual steps

The final selection of suitable frameworks and technologies should be based on a requirements analysis and a detailed architectural design that expands upon and refines the broadly sketched requirements identified thus far. Non-functional requirements must be given special consideration in this regard. The topic of IT security was addressed in the previous section. Performance and scalability are also extremely important, as high user numbers can be expected, given that the platform is to be available to all patients in Germany. The large number of users means in turn that there will be a very large inflow of data to be processed by the platform. Given such loads, the technologies selected for implementation and the underlying infrastructure must allow for scaling.

Another essential non-functional requirement to be considered is the user experience (UX). Since the national health platform is open to all patients, and should be easy to use for everyone, consideration must be given to the special needs and preferences of different user groups, some of which are particularly vulnerable. These include elderly people or patients with a cognitive impairment, for example. Special attention should be paid to these groups during the design process.

The requirements analysis also determines the platform’s additional functionalities, including user and authorization management, pathway model management, and the instantiation of pathway models for patients. This refers to the assignment of specific health information and services to certain individuals, and their display via the platform, based on those individuals’ contextual information.

Framework for deployment and hosting

The core of the national health platform is the software itself, which must be made functional via distribution to one or more servers. This process is called “deployment.” In addition, it is required to operate the runtime environment for the software, which is referred to as “hosting.” Moreover, the platform will process or convey large quantities of data, ranging from user data and identifiers to links to health information and services to contextual information. Some of this must be present on the platform itself in order to be processed appropriately. All this data must also be stored, or hosted, on one or more servers.

The hosting of the platform and all stored data must of course be carried out in a technologically state-of-the-art way. This means that data handling must comply with the requirements of the General Data Protection Regulation (GDPR), and in the case of health-related data, with the requirements of the special protective measures defined by the GDPR. As the platform’s IT architecture is further refined, a number of decisions must be made regarding deployment. For example, a number of issues must be resolved, including which parts of the overall system are to be deployed where, and how this is to be done; and which organizational units are to be responsible for hosting them in each case. For example, the software hosting can be separated from the data hosting, with security measures put into place on both sides. Monitoring data flows on both the software and database sides and physically separating the servers will make it more difficult to compromise the system as a whole. Measures of this kind would help achieve a higher level of security and data-handing reliability

Specific analyses of potential attack scenarios are additionally needed in order to protect the national health platform. These must be carried out as the software architecture is designed. In principle, one goal should be for the hosting, including the storage of backups, to take place in Europe. Moreover, this should be handled by an entity recognized within the healthcare sector as being trustworthy.

Event-driven architecture

Health information and services are largely provided using the push principle – that is, patients receive the information relevant to them along the pathway models without having to take action themselves. Regardless, patients can also use a traditional search function. When matching search hits to queries, the platform can use all available contextual information to display matching results. This information can be used to create an individually tailored ranking of search results analogous to that provided by established search engines. In contrast to these, however, the national health platform can as needed report transparently on what specific contextual information, with which weighting, has led to a particular ranking of search results. This helps to gain the trust of both patients and the providers of health information and services.

A system like the national health platform outlined here can be technically represented using what is called an “event-driven architecture.” An architecture of this kind focuses on the communication between different components in the overall system that takes place as events occur. Each event is triggered by an event producer, and is then processed by an “event handler.” This technical subsystem determines the subsequent actions based on the producer, timing, type and content of the event – for example, it may determine the appropriate health information to display to a patient.

Event-driven architectures are an established concept in software engineering, with a number of technical frameworks already in existence that can facilitate implementation. The Apache Kafka message broker (https://kafka.apache.org) offers one such example of a possible implementation strategy. Apache Kafka is a versatile technology that does not incorporate domain-specific features. In contrast, frameworks also exist that incorporate or define specific standards and functionalities for handling health-related data. Stanford University provides an open source framework for building healthcare-sector ecosystems called Spezi (https://github.com/StanfordSpezi). This framework defines an architecture that facilitates the exchange of health-related data with other systems by implementing the HL7®-defined FHIR® standard for the exchange of health-related data (https://www.hl7.org/fhir/). It would be conceivable – after an in-depth analysis of the requirements and the framework – to build selected parts of the platform on Spezi.

Feasible and open to new ideas

The considerations presented here regarding the technical implementation of a national health platform outline the basic functionality and establish the technical feasibility of the concept. At the same time, we show that the “brokering” model – that is, the provision of health information and services based on patients’ individual contextual information – is feasible. This is especially true if the platform can build on standards and open-source frameworks such as Stanford’s Spezi, as this can reduce effort and costs while decreasing dependence on proprietary solutions.

In addition, according to the concept, the national health platform is limited at its core to serving as an intermediary for the brokering of relevant information and digital services. This means the platform itself does not engage in the editorial creation of health information, the development of services or the acquisition of individuals’ contextual information. This constellation, which is typical of digital ecosystems, makes it possible to distribute responsibilities, and thus focus resources on quality assurance and the automated presentation of relevant information and offerings to patients.

The remarks in this paper deliberately do not specify a specific system architecture, and do not offer any preliminary technical definitions. The final determination of the appropriate architecture and technologies to realize the platform and its interfaces will be made after the functional and non-functional requirements have been worked out in detail and documented.

Author

Dr. Matthias Koch is a software engineer at Fraunhofer IESE, where he heads the Digital Innovation Design department. He has been designing innovative software solutions since 2012, with clients from the business community and in research projects. He has focused in particular on the areas of requirements and user experience engineering, as well as on the implementation of innovation workshops. Koch’s work involves the design of methods and tools for building digital platforms, especially in the area of digital ecosystems.

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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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    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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      Successfully establishing health ecosystems – models from abroad

      Dr. Tobias Silberzahn

      A health ecosystem, such as the one envisaged by the “Trusted Health Ecosystems” project, must fulfill several requirements if it is to bring value to stakeholders within a health system. International models have demonstrated that a successful operational model combines the active participation and coordination among involved actors with common technical standards.

      Digital ecosystems have transformed traditional business models across various industries, generating added value for customers and market participants. For instance, e-commerce-platform providers and prospective buyers can now directly interact, which leads to more efficient transactions. Open ecosystems of this type could also play a role in digital healthcare. Key characteristics of such ecosystems are:

      A multi-stakeholder network. An open ecosystem brings together different actors with varying interests. In healthcare, these actors may encompass patients, health service providers, payers and providers of products and services.

      Co-creation. The development of information, products and services does not rest solely with the platform operator. Third parties or stakeholders “on the platform” also contribute to this process. This principle serves as the basis for “app stores” provided by mobile phone companies, where external developers offer downloadable applications.

      Self-reinforcing effects. Value drives adoption, and platform activity attracts new users. This mechanism is well-known from social networks, which can rapidly expand once a critical mass of users is reached. Similar self-reinforcing effects could occur within a digital healthcare ecosystem. As more citizens use a digital health service, its relevance for healthcare service providers increases, and vice versa.

      Key considerations in designing health ecosystems: Four success factors from an operating model perspective

      Active participation of stakeholders constitutes a pivotal aspect of a successful ecosystem. An additional element is proper organizational design to unlock the ecosystem’s full potential. Here, four factors assume a central role, as illustrated by examples from other countries:

       1. End-to-end patient “pathways”

      From a user perspective, the seamless integration of stakeholders and services is critical: Patient pathways need to be designed end-to-end and thus ensure the harmonious orchestration of multiple services in a user-friendly way, e.g., a journey encompassing appointment booking, (tele-)consultations, e-prescriptions and medication delivery. Foundational “enabler applications,” such as electronic patient records, facilitate seamless care by maintaining consistent data across systems without necessitating changes.

      Case example: The Health Village in Finland

      Developed by Finnish university clinics, the Health Village comprises virtual hubs for a variety of care categories, including emergency care, rehabilitation and mental health. These hubs are brought together as required based on a patient’s diagnosis. Empowered by physician referrals, participants can access digital health services such as video-based consultations and self-help programs via smartphones. This innovative approach has introduced more than 400 distinct care pathways to complement on-site healthcare.

       2. User centricity

      To achieve widespread adoption, the offerings within the ecosystem must cater to user needs. User centricity means involving ecosystem participants in the development and enhancement of services, thus fostering stronger user loyalty.

      Case example: “Sundhed.dk” in Denmark

      Sundhed.dk, the Danish health portal, actively involves patients in developing and improving e-health applications through a dedicated “user panel.” Through methods like focus groups, interviews and questionnaires, targeted user feedback is collected. These insights, including feedback on existing solutions and requests for new functionalities, contribute to refining the user experience and ultimately benefiting patients.

       3. Governance to involve stakeholders

      Effective governance mechanisms are essential for the functionality of an ecosystem. Typically, the ecosystem operator assumes the role of orchestrator, overseeing a framework for demand- and solution-oriented interactions.

      Case example: The Well healthcare platform in Switzerland

      Initially founded by health insurers and healthcare providers, the Well platform now incorporates physician networks and other collaborators. The integration of various actors is orchestrated by the Well AG.

       4. Technical interoperability

      Successful ecosystems facilitate seamless information exchange between stakeholders through standardized interfaces. These interfaces are typically established by the ecosystem orchestrator and are based on international standards. For example, the Fast Healthcare Interoperability Resource (FHIR) standard creates a basis for national and cross-border data exchanges in the healthcare sector.

      Case example: FHIR in Israel

      Israel relies on the FHIR standard within the healthcare domain, enhancing the usability of health data through a mix of incentives and requirements. This includes the Israeli Health Maintenance Organizations (which operate like integrated insurers, service providers and hospital operators), research institutes, startups, and additional healthcare providers. These organizations all benefit from improved health data exchange.

      The future of open healthcare ecosystems

      Open healthcare ecosystems possess the potential to better connect healthcare stakeholders with citizens. Such ecosystems can build up on existing structures: For example, a Germany’s national health infrastructure known as “Telematikinfrastruktur.” Electronic patient records and e-prescriptions can serve as foundational elements for health data exchange within an open healthcare ecosystem.

      Building successful open ecosystems demands a multi-faceted approach: User-centric concepts, effective governance mechanisms and standards are needed. To achieve this, an organization can be established to develop the ecosystem’s strategic direction, oversee orchestration and provide stakeholders and third-party providers with participation opportunities.

      Author

      Tobias Silberzahn holds a doctorate in biochemistry and is a Partner at the Berlin office of McKinsey & Company, Inc. His work focuses on healthcare innovation and the digital transformation of healthcare. Tobias also leads the global Health Tech Network, which brings together more than 1,800 health tech CEOs and founders, along with 250 investors and 300 corporations. He is co-publisher of the annual “eHealth Monitor,” a publication distributed by MWV publishing house that focuses on the digitalization of the German healthcare system. Within McKinsey, Tobias also co-manages a comprehensive health and well-being program that encompasses aspects such as sleep, nutrition, fitness, and stress management.

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        InfoCure: Making quality visible

        Our vision of a national health platform is all about trust. This includes ensuring that users can rely absolutely on the quality of the content and services being offered. But how can this goal be realized in an era of disinformation and conspiracy theories? In a subproject called InfoCure, we explore the issue of how good information quality can be made visible, and how disinformation can be contained.

        More and more people today use the internet to inform themselves about health-related issues, often using major social media platforms such as YouTube, TikTok, Facebook and Telegram. Through these networks, disinformation and false information can spread faster than ever before. At the same time, the platform operators’ algorithms generate lists of continuously refreshed content that build on previous search patterns and confirm users in their previously held assumptions and attitudes. These “reinforcement loops” are themselves enhanced by the digital network’s social environments, which often reflect users’ own opinions back to them, and thus create fertile soil for disinformation and conspiracy theories.

        “The rapid spread of health misinformation through digital platforms has become a serious threat to public health globally.“

        Andy Pattison, WHO (2021)

        Information quality as brand essence

        Trust is formed in digital worlds through the responsible handling of personal data or appropriate measures to increase data security, for example. Yet ensuring that the information and services offered are reliable and of high quality is another basic prerequisite for the development of trust in digital infrastructures. To date, social networks have provided virtually no means of indicating the trustworthiness or credibility of an information source, making it very difficult to ascertain the methodological quality of the information delivered. The same is true of digital services. A national health platform must make a clear difference here.

        Quality-assurance strategies for health information today have focused primarily on the review of individual informational elements such as texts or videos. However, this approach demands considerable human and financial resources, and costs one thing above all: time. Yet digital ecosystems and their platform approaches are so successful precisely because they provide their services largely digitally, and can thus grow very quickly within a very short period of time.

        Provider certification

        To keep up with this rapid pace, platform operators need a quality assurance approach that evaluates the providers of information rather than focusing on individual  information. Structural aspects (e.g., expertise) and criteria relating to process quality (e.g., use of certain methods) could be used in these assessments. However, a voluntary commitment to quality assurance is unlikely to be enough to give platform users a sufficient level of confidence. Instead, an external audit by an independent body in the sense of a  certification procedure  would be required. A multistage audit-based procedure is a good way of obtaining a reliable assessment of a provider’s structures and processes.

        This kind of quality-oriented selection of trustworthy information providers could reduce the risk of disinformation and misinformation to a minimum. In combination with other instruments such as user feedback and digital review procedures, the platform’s information and service quality as a whole could come to be regarded as a trusted space, supporting users and providing them with significant relief in their search for credible information.

        Diverse applications possible

        By becoming certified, health information and service providers could qualify for participation in the national health platform’s digital ecosystem. However, this certification does not have to be limited to this access-granting: Indeed, once a provider is certified, the digital certificate could be used for many other purposes.

        Operators of major search engines could use this information as a means of identifying reputable providers for the first time, and incorporate this new knowledge when calculating the relevance of search results. Platforms and search engines could label trustworthy information providers accordingly, and background information on the providers would be visible to users. This would reward all those providers who go to great effort to ensure the quality of their information .

        Of course, a single set of rules cannot cover all types of information. For example, patient descriptions of personal experiences can convey valuable information that relates to the psychosocial aspects of dealing with a disease. Different criteria must therefore be taken into account when evaluating the quality of such offerings. A similar logic applies to socio-legal information, which must meet completely different quality requirements than medical content.

        Finally, it should be noted that in addition to pure information offerings, the health-related internet is full of digital services such as online appointment functions, databases, video-based online doctor visits and second-opinion services, all of which must be considered on their own terms. In the medium to long term, the original certification for medical patient information can and should be expanded in a modular way to include additional areas of application.

        International approach

        Assuring the quality of health-related information in the digital age is a challenge that cannot be addressed solely at the national level. For this reason, international standards must be taken into consideration, and must be strictly adhered to in the interests of interoperability. Furthermore, in order to achieve impact beyond national borders, the development of new quality standards should take place in the context of an international expert dialogue.

        In our search for relevant standards and projects, we became aware of an initiative led by the U.S. National Academy of Medicine (NAM). In 2021, with input from an independent advisory group of scientists, this project developed and published a set of basic principles and attributes that could be used to identify credible sources of health information. The goal of the initiative was primarily to provide social networks and platforms with criteria for identifying providers of trustworthy health information.

        The principles  state that, to be considered credible, sources should be   science-based objective, transparent and accountable, hence they provide a good foundation for the evaluation of information providers. However, to use these as the basis for a certification procedure, further operationalization is required. In the course of dialogue with international specialized partners and the World Health Organization (WHO), the idea has emerged of translating these principles into a concrete indicator system that could serve as the basis for an audit-based certification process for health information providers. The idea will be realized via a clear and familiar division of tasks: The frameworks and standards will be defined consensually at the international level, while the actual certification will be performed by national-level institutions or organizations.

         

        Working group has begun its activity

        Numerous past initiatives have focused on the assessment, description and development of information quality in the health sector. These provide a very good starting point in developing a set of such indicators. The current project differs from these existing initiatives in its clear focus on providers and international standardization, and in the fact that major tech companies are today facing mounting pressure to deal with disinformation. The approach described above offers a valuable opportunity to make high-quality information more accessible to patients and support healthy decisions through good information, and thus to make a major contribution to the promotion of health literacy.

        „Digital platforms have a uniquely powerful opportunity to enable worldwide access to high-quality health information.“

        Victor J. Dzau, NAM (2021)

        In 2023, the Bertelsmann Stiftung, together with the German Network for Evidence-Based Medicine and Health Literacy Germany, established an international working group that will define the tasks ahead in the context of a scientific discussion paper, and additionally draw up initial proposals for the development of an indicator system. In the medium term, the creation of InfoCure is intended to provide an international certification system for credible providers of health information and services that will initially be implemented in Germany, and then scaled up internationally in a subsequent step.

        Bibliography

        Burstin H, Curry S, Ranney M L, Arora V, Boxer Wachler B, Chou W-Y S, Correa R, Cryer D, Dizon D, Flores E, Harmon G, Jain A, Johnson K, Laine C, Leininger L, McMahon G, Michaelis L, Minhas R, Mularski R, Oldham J, Padman R, Pinnock C, Rivera J, Southwell B, Villarruel A, Wallace K (2023). Identifying Credible Sources of Health Information in Social Media: Phase 2—Considerations for Non-accredited Nonprofit Organizations, For-profit Entities, and Individual Sources. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/202305b

        Kington R, Arnesen S, Chou W-Y S, Curry S, Lazer D, Villarruel A (2021). Identifying Credible Sources of Health Information in Social Media: Principles and Attributes. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/202107a

        Schaeffer D, Berens E-M, Gille S, Griese L, Klinger J, de Sombre S, Vogt D, Hurrelmann K (2021). Gesundheitskompetenz der Bevölkerung in Deutschland – vor und während der Corona Pandemie: Ergebnisse des HLS-GER 2. Interdisziplinäres Zentrum für Gesundheitskompetenzforschung (IZGK), Universität Bielefeld. Bielefeld. DOI: https://doi.org/10.4119/unibi/2950305

        WHO (2021). WHO online consultation meeting to discuss global principles for identifying credible sources of health information on social media. Meeting Summary. Abrufbar unter: Summary-Global principles for identifying credible sources of health information on social media (who.int) (Zugriff am 25.07.2023).

        WHO (2022). WHO and NAM encourage digital platforms to apply global principles for identifying credible sources of health information. WHO Departmental News, 24. Februar 2022. Abrufbar unter: WHO and NAM encourage digital platforms to apply global principles for identifying credible sources of health information (Zugriff am 25.07.2023).

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