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Public Health – Possible impacts of disinformation

Transcript

Intro

The only way we can fight infodemics is with trusted information and better health literacy.

How dangerous are infodemics for patients?

Infodemics are very dangerous for patients. They are the disease of the internet. Unfortunately, it crosses the line from the internet into people’s lives. Misinformation has caused consequences for public health and for patients’ health through, for example, feeding into vaccine hesitancy and vaccine resistance, feeding into mistaken, non-evidence-based beliefs, or even during the pandemic, creating rushes to buy products that were inappropriate and even dangerous for patients.

What are the needs of patients in times of digital transformation?

In times of digital transformation, the first thing patients need is trust. They need to be able to trust that they receive good quality information, that the information and the data they provide to the health system is treated properly, and trust that it is used to improve their life and the life of others like them. So from that point of view, I would translate that from a digital health perspective to how can new technologies, digital technologies, how can they help make things faster, make things better, and bring better outcomes for patients.

What needs to happen at European level to promote a trustworthy information architecture?

Europe needs a trustworthy information architecture at European level. At the moment, we don’t have one. We should get one with the European health data space legislation. And for that to happen, we need to ensure that patients remain involved in the design of the information architecture and the tools that it uses, from electronic health records to all the way to national data boards That control how the data is shared with researchers and developers. And the other thing that needs to happen is a massive investment in digital and general health literacy for patients, for citizens.

Content

Expert

Anca Toma is the Executive Director of the European Patients’ Forum (EPF) which acts as an intermediary between the patient community and EU policymakers. Anca has over 15 years of experience in European health policy working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns.

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    Benefit model for a national health platform

    A key success factor for digital platforms lies in the benefits they generate both for participating providers and consumers. Working jointly with the Fraunhofer Institute for Experimental Software Engineering (IESE) and the Bittner & Thranberend concept agency, we have developed a benefit model for the national health platform that provides advantages to all participating stakeholders.

    Digital platforms can give providers of goods and services access to a large customer base, while customers in turn can find a broad selection of offers and services there (see Ecosystem design: benefits-for-all). Consequently, the task of a national health platform would be to serve as an intermediary between providers and potential users of health-related information and services.

    But why should information and software providers subject themselves to the rules and quality requirements of such a platform? What factors would motivate established stakeholders in the healthcare system to actively participate in such an ecosystem? And why should patients choose to use a health platform in the first place?

    The answer is simple: Everyone involved should gain real, measurable advantages. The starting point for any discussion of the national health platform must be its core objective: making the exchange of health information and meaningful digital services smoother through a platform approach, and bundle quality-assured offerings (see Discover more, search less). The challenge of benefit modeling is then to generate the greatest possible benefit for as many actors as possible, while avoiding or compensating disadvantages for third parties.

    Stakeholder analysis and benefit modeling

    For the benefit model outlined here, workshop groups formulated specific use cases from the patient’s point of view, and analyzed the associated information and support needs. These case studies were then used to identify groups of supplier-side stakeholders that, in conjunction with users, will also be important for the platform’s success. These stakeholders include providers of health information and digital services, for example. In addition, traditional stakeholders in the healthcare and education sectors, municipalities, and many other entities could also play a part in the digital ecosystem, all contributing to a rich and high-quality information offering.

    An stakeholder analysis was used to identify and classify the interests, needs and potential concerns of the identified groups. With the aim of developing the most balanced benefit model possible, relationships and interactions among these stakeholders were also taken into account. To this end, publications and press reports were evaluated and background discussions and interviews with representatives of the relevant institutions were conducted. Based on these analyses and additional expert assessments, the team then formulated potential benefits for each individual group and compiled these in a preliminary benefits catalog.

    The benefit model

    Ideally, the digital ecosystem and national health platform would be capable of generating multifaceted benefits for all stakeholders, although these would likely vary from stakeholder to stakeholder. Nevertheless, overarching value-adds can be identified that would benefit all stakeholders involved, and which derive from the triangular relationship formed by the providers, the users and the platform operator.

     

    Positioning in the platform market

    Traditional healthcare-system actors do not think or act like multinational platform operators, as they perform completely different roles and tasks. Presumably, none of these players would alone be able to establish an offering likely to survive in the new meta-platform marketplace. The digital ecosystem would provide them with the strategic option of positioning themselves collaboratively in the new healthcare platform market using an existing technical infrastructure.

    Access to data

    Thanks to the size of the community and the large number of interfaces with other platforms, the ecosystem could also generate a unique corpus of data extending beyond the private personal patient data. Participating entities could use this data for various purposes, for instance for the further development of their own (information) services, for healthcare research or to help guide therapeutic activities. The interplay of data from many different sources would offer a particularly interesting opportunity to generate new knowledge and to use it for a demand-driven further development of our health system.

    Professional information management

    The process-based information paths (see Discover more, search less), the high degree of personalization and the direct links to the various healthcare system entities would give rise to a new information and communication architecture that would create structure and help orient users. This in turn would provide healthcare professionals with significant benefits, as the platform would offer an opportunity to optimize information and communication management, while increasing the quality and efficiency of information handling. In addition, it is possible to link the care process with digital information and support services in a targeted manner.

    One-stop shop

    With the explosion of digitally available health information, patients are experiencing increasing difficulties in finding the information they need. The metaphor of the needle in the haystack aptly describes the average information seeker’s morass of detours and wrong turns. With its market-based and inclusive brokering approach (see The state as a provider of information), the national health platform has the potential to become the hub of the healthcare system’s information architecture, bringing together all key offerings in one place. This approach is inspired by the “one-stop shop” idea, which adds considerable value by helping users find their way through the maze of digital information and service offerings.

    Verified providers

    Numerous studies have shown that in this era of disinformation and conspiracy theories, people are finding it increasingly difficult to assess the truth of information or the credibility of sources. The concept for the national health platform thus includes strict access rules for providers which would act as a kind of filter. Providers would be required to obtain an audit-based certification at regular intervals to prove that they met certain quality standards (see InfoCure: Making quality visible). This would keep questionable providers out of the ecosystem. This quality-based selection of providers represents a key benefit for patients, and creates the basis for a priceless asset: trust.

    Focus on the essential

    One useful strategy in dealing with the daily flood of information is to filter it, focusing attention on what is most essential. “Essential” information can be described as that which is relevant to a person’s individual context and meets their situational information needs. With the help of algorithmic systems, content and service offers on the national health platform can be personalised and context sensitive. The resulting individually tailored selection and presentation of information and digital services would be of significant help to patients, saving them time and relieving them of cognitive burdens.

    Alongside these more generic advantages, many other benefits can be identified both for individuals and groups of actors. For example, well-informed patients take more responsibility for their own health, adhere more closely to treatment plans, are able to navigate the healthcare system more confidently, and make healthier choices in everyday life. Health care researchers could benefit from new insights and options of analysis. Information providers and other services would have the opportunity to distinguish themselves through their presence on the platform with high-quality offerings, while additionally targeting their outreach efforts more efficiently and lowering transaction costs.

    Another aspect of benefit modeling is ensuring that stakeholders do not suffer any disadvantages due to their participation in the ecosystem. Our concept for a national health platform therefore envisages that the platform operator will not offer any information or health services of its own, restricting itself strictly to the role of intermediary. The platform must not undermine the offerings provided by participating companies and organizations, or have any negative influence on their user traffic figures. Thus, as a rule, information and services would not be offered on the platform itself. Instead, users would visit the providers’ external sites (see Discover more, search less). The relationship between the platform operator and the providers should be based on clear access criteria and principles of fairness and transparency, thus creating a network of benefits and added value for all participating stakeholders.

    Recommended articles

    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.

    Find out more

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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.

      Recommended video

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

       

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        What is platform power?

        Dr. Michael Seemann

        Platforms. We all use them every day. Instagram, eBay, Uber, Wolt, Airbnb … Platforms are useful because they organize communication, coordination and transactions, and thus make all kinds of tasks easier. But if we’re honest with ourselves, we also often feel uncomfortable with our dependence upon them. In the following article, I explain various aspects of platform power and its implications.

        Platforms have power. Few would disagree with this truism. But there is often dispute about exactly what kind of power they have. For example, there is the issue of economic power. Platform companies often have vast amounts of money and resources that enable them to implement their ideas. In addition, they have market power. Platform companies are often described and analyzed as monopolies, or at least as actors that dominate their markets. And finally, platforms have data power. They collect mountains of data about us and our behavior, and about society as a whole. In addition, they can increasingly be said to have political power. Their lobbying corps are among Brussels’ and Washington’s largest, and they can often influence political discourse through their algorithms.

        All of these analyses are correct. But it seems to me that these areas of power are themselves only the effects of an entirely different power. My thesis is that platforms have their own, very specific power, and that all these other forms of power derive from it

        Platform power

        I am referring here to “platform power” (Seemann 2021): a power held and wielded only by platforms, and which can be explained only by their very special structure.

        Platform power consists of two parts:

        1. Network power, which draws individuals, institutions and other participants into the platform and binds them to it.
        2. Control, which allows platform operators to influence everything that happens on the platform.

        Network power is actually just another name for “network effects.” This term from the field of economics describes the circumstance in which actors always prefer the network that itself contains the greatest number of other actors. We all have seen how this works: A social network with no one else in it is not very appealing. To have value to me, a network must allow me to communicate with others. The value of a network is therefore directly related to its size.

        However, this effect can also be described as a form of power (Grewal 2008). My decision to join one network or the other is not completely free, as it is strongly influenced by these network effects. At the same time, it’s hard to leave a network in which I’ve already built a lot of relationships. This effect is also called “lock-in,” because in a certain sense it prevents departures. Network effects thus draw people into a network and keep them there. For this reason, it also makes sense to speak of “network power.”

        But network power long predates digital platforms’ arrival on the scene. Most of us learned English as our first foreign language, for example. This is partly because it is so useful to be able to speak English, given that English is the language spoken by the greatest number of other people in the world. The network power of the English language, one might say, is greater than that of French.

        Network power exists everywhere in our lives. Gestures, languages, customs – all have network power because they rely on there being a sufficient number of other people able to recognize and interpret them. Platforms too have network power. But while no one is able on their own to control, change or exclude people from languages, gestures or customs, Instagram and Uber can determine who is allowed to access their networks and what people can do there.

        This is where control, the second factor of platform power, comes into play. Platforms are technical infrastructures that give their operators many opportunities to exercise control. Simply by designing the platform’s features, operators can determine which things are possible on them and which are not. They also have the ability to control what interactions happen on the platform via the search, recommendation or matching algorithms. And they can even decide to exclude certain people, or reduce their opportunities for interaction. Put these two things together – network power and the ability to exercise control – and a new form of power emerges: platform power.

        The graph grab

        Every platform faces an initial challenge: To be attractive to users, the platform must acquire network power. To do so, it must attract users. This is a chicken-and-egg problem that is difficult to solve. In the past, platforms have solved the dilemma by incorporating existing networks within themselves. Google, for example, sits on top of the world wide web, WhatsApp imports its users’ contacts by uploading their address books, Uber initially poached cab drivers, and Facebook went from campus to campus in its early days persuading students at elite universities to join its platform.

        The trick of integrating existing networks into your platform in order to make them the basis of your own network’s growth is what I call “graph grabbing” (Graphnahme). A graph grab of this kind conducted by profit-oriented platforms could pose a serious threat in the healthcare sector. I have developed a plausible scenario for this elsewhere (Seemann 2022).

        The politics of platforms

        It is no longer possible to understand today’s politics without taking platform politics seriously. Google’s past involvement in China, Facebook’s influence on the U.S. elections, Elon Musk’s purchase of Twitter: Platforms are political, even if they have long wanted to give a different impression. Even the incorporation of another set of networked relationships is a political act. Imagine if a private platform could gain similar control over the healthcare system, for example.

        The business model

        However, platform power is not only a source of political order-making; it is also the foundation of all platform business models. In one way or another, every platform business model uses network power and control as leverage to make certain user groups pay – whether by limiting access to features or by limiting access to other users. This is evident when Uber or Airbnb collect commissions, or when Amazon takes fees from merchants, for example. But even the advertising business model only represents the toll that advertisers pay to the commercial platforms in order to be allowed to reach the user base.

        Enshittification

        For-profit platforms face a contradiction here. On the one hand, a platform always wants to grow, because growth is the way to achieve platform power and thus usefulness. To do this, it must be as open as possible, and provide everyone access to everything. On the other hand, a platform usually also wants to earn money. To fulfill this goal, it must close itself off and limit access, because otherwise no one will pay the tolls. As a result of these conflicting dynamics, every platform goes through multiple phases.

        In the early phase – that is, shortly after the graph grab – a platform is focused on growth. In this phase, platforms try to be as useful as possible to everyone in order to acquire platform power. The platform finds its business model only once a significant number of people have joined and begun using it. The operator then determines the bottleneck points where it wants to exact tolls, and starts to close them little by little. As growth levels off, these access points are increasingly closed off, and tolls are collected in an increasing number of places. In the next phase, the platform is then concerned only with extracting the greatest amount of profit possible from the increasingly dependent community. Little by little, user options narrow, overall usefulness diminishes and use of the platform becomes increasingly expensive. Science-fiction author Cory Doctorow and net activist Rebecca Giblin call this process “enshittification” (Giblin & Doctorow 2022).

        The ambivalence of platforms: Usefulness is power

        It is incredibly difficult to get people to establish a common standard. In sociology, this is referred to as the “problem of collective action” (Olson 1965). Once a common communication standard has been established, all communication participants benefit from it. That is the great merit of platforms. Therefore, we can’t forget: Platforms are useful for the same reason they are powerful.

        Platforms are a concept for organizing human interactions in which network power can be combined with control. Platform power is the foundation both of platforms’ increasing political influence and their business models. Since most platform operators are capitalistic companies, they look for ways to skim off the added value they generate. To do so, they must inevitably limit access to interactions, and reduce the platform’s usefulness.

        Platforms are useful, and are dangerous precisely for that reason. Platforms should not be rejected as a matter of principle, but users should be very careful about which platforms they depend on. Especially when it comes to sensitive social settings such as healthcare.

        Bibliography

        Giblin R, Doctorow C (2022). Chokepoint Capitalism: How Big Tech and Big Content Captured Creative Labor Markets and How We’ll Win Them Back. Boston.

        Grewal D S (2008). Network Power. The Social Dynamics of Globalization. New Haven.

        Olson M (1965). The Logic of Collective Action. Public Goods and the Theory of Groups. Cambridge.

        Schmitt C (1950). Der Nomos der Erde im Völkerrecht des Jus Publicum Europaeum. Berlin.

        Seemann M (2014). Das Neue Spiel. Strategien für die Welt nach dem digitalen Kontrollverlust. Freiburg.

        Seemann M (2021). Die Macht der Plattformen. Politik in Zeiten der Internetgiganten. Berlin.

        Seemann M (2022). Die Graphnahme der Gesundheit. Ein Planspiel zur möglichen Plattformisierung des deutschen Gesundheitssystems. Baas J (Hrsg.). Gesundheit im Zeitalter der Plattformökonomie. Ziele. Herausforderungen. Handlungsoptionen. Berlin. 50–58.

        Author

        Michael Seemann studied applied cultural science and received his Ph.D. in media science in 2021. In 2010, he launched a blog focusing on the loss of control over data on the internet, and in 2014 published a book on this topic under the title “Das Neue Spiel” (The New Game). His second book, “Die Macht der Plattformen ” (The Power of Platforms) was published in 2021. In 2016, he served as an official expert for the Bundestag on the topic of platform regulation. He delivers regular presentations on topics including internet culture, platforms, artificial intelligence and the crisis of institutions in an era marked by the digital loss of control.

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          Objectives and conceptual premises

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

            Dr. Sebastian Schmidt-Kaehler
            Dr. Inga Münch

            The digital age is impacting our lives in ways we’ve never experienced before, and it’s doing so at an accelerating pace. This rapid change, coupled with the disruptive effects it brings, places considerable demands on society in terms of adaptability. Digital platforms are at the forefront of this change, as they supply the essential infrastructure and services driving this transformation.

            Through their platforms, digital ecosystems have fundamentally altered entire sectors of the economy. They have changed how people interact and communicate with each other, how goods and services are marketed, and how educational and informational resources are accessed. Platforms are not only impacting the world of work, they have disrupted the media landscape and upended the power dynamics of the mobility industry. So why should healthcare be any different?

            New power dynamics

            Global tech companies are venturing into the healthcare sector, offering immense potential for a modern, patient-centered and continually evolving healthcare system. While network effects and economies of scale present impressive growth opportunities, they also pose risks to the principle of solidarity that finances our healthcare system. One thing is certain: Digital platforms will profoundly reshape the power dynamics within healthcare systems. It is our responsibility to harness and direct their innovative and guiding influence for the greater good (see video: Managing the risks of platform economy).

            Platform strategies for national healthcare systems

            The time has come for public and civil society actors to create their own platforms and take the lead in shaping the foundational digital infrastructure, defining value-based guidelines for the future of digital healthcare. National healthcare systems need to formulate their own platform strategies to carve out a position for themselves in the emerging healthcare market. With our “Trusted Health Ecosystems” project, we are paving the way forward to achieve this and developing a concrete vision of a future national healthcare platform. We thus aim to illustrate the potential benefits that can arise from collaborative efforts involving government, civil society and the private sector (see Conceptual considerations: an overview).

            Promoting health literacy

            The focus of our product concept is to provide patients personalized information and services. By doing this, we confront the enduring problem of health literacy, with more than half of the German population indicating significant struggles in accessing, understanding, appraising and applying health-related information (see Health literacy: challenges of the future). Without health literacy, patients find it difficult to make informed decisions about their health and actively participate in their treatment process. By consolidating and intelligently disseminating curated information, the platform could help streamline how information is handled and reshape the information landscape within the healthcare sector.

            Inspiration

            The Bertelsmann Stiftung cannot and will not implement and operate this platform itself, because merely providing a digital infrastructure would fall far short of the mark. To cultivate a digital ecosystem that benefits all participants, it requires more than a legal foundation; but also the insight and collective will of all relevant actors in the healthcare system. Therefore, as a foundation, we see our role to inspire those who can collaboratively bring this vision to fruition.

            International context

            Digital ecosystems have networked the world more tightly than ever before. While these platforms adapt to national circumstances, they often extend beyond borders. This presents challenges that can no longer be effectively tackled solely at the national level. International collaboration and coordination are thus imperative if we are to mitigate risks and seize the opportunities inherent in this transformation. We have therefore positioned our vision of a national healthcare platform within an international framework from the outset, engaging with international organizations in Europe and beyond. This applies in particular to the quality, safety and interoperability standards associated with such a platform (see InfoCure: Making quality visible).

            Real-time project results

            Since the advent of AI-powered language models, we have seen just how rapidly digital transformation is reshaping our lives. Given the exponential pace at which things are changing, we have we’ve chosen to release our project findings as they develop – in “real time” – rather than holding off until the project has concluded. This concept is a living document and as we move forward, this concept will undergo continual refinement through contributions and the addition of new sections, all aimed at further shaping the vision of the national healthcare platform.

            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). He is also currently a member of the expert committee for the National Action Plan Health Literacy in Germany.

            Dr. Inga Münch is a health researcher and co-lead of 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, Dr. Münch has conducted research in areas encompassing health education, patient-oriented care and health systems.

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              The transformative nature of digital ecosystems

              Dr. Matthias Naab
              Dr. Marcus Trapp

              Offering numerous benefits to everyone involved, the collaborative nature of digital ecosystems and platform economies has led to significant transformations in various domains of life. This overview highlights the appealing aspects of digital ecosystems and their platforms and explores ways to harness their innovative potential.

               

              Digital ecosystems ...

              ... are appealing

              Delivering real added value is the only way digital ecosystems can succeed in convincing independent participants to get involved. One major advantage of these ecosystems is the access they offer to a diverse community of participants, each contributing to the system either as suppliers or consumers, depending on their role. This diverse and geographically dispersed community can generate various additional advantages. To ensure widespread participation, digital ecosystems typically maintain an inclusive approach and strive to attract as many individuals, organizations, and companies as possible. As a result, access to their ecosystsems is rarely restricted (Choudary 2017).

              The appeal of digital platforms for providing and consuming ecosystem services lies in their high-level harmonization, user-friendly interfaces, and excellent user experiences. These factors enable efficient access to a wide range of ecosystem participants. Initiators and operators of digital platforms invest significant time and resources to achieve this harmonization, encompassing various aspects such as business models, technical standards (e.g., standardized access via APIs), and legal frameworks (e.g., standardized contractual relationships), particularly for commercial ecosystems. This harmonization is reflected in functions like payments, search capabilities, and data transformations. Not-for-profit ecosystems follow a similar approach, although their goals are not profit-oriented. Users often don’t realize the effort invested in creating seamless processes due to the smooth and enjoyable experiences provided. However, it is important to recognize that the simplicity and elegance of a digital ecosystem’s services do not imply a lack of complexity in its design.

              Digital ecosystems offer bundled online services, eliminating the need for users to extensively research individual service providers. The added value lies in the integration of the digital platform and the active participation of the community members, which results in a combined power that enhances the services provided. To attract users, a digital ecosystem must ensure seamless interaction between its platform and community.

              ... are scalable

              Digital ecosystems present operators with significant opportunities to develop innovative business models. By becoming a central point of contact for a large number of participants, organizations can strategically reposition themselves in the market or sector and expand their influence. The scalability and high growth potential of digital ecosystems are facilitated by their ability to provide services in a purely digital form.  As the ecosystem attracts more participants, network effects come into play, generating increased business activity within the ecosystem. This growth opens up avenues for further expansion of the platform and services, enhancing the overall attractiveness of the ecosystem as a whole.

              ... are disruptive

              A digital ecosystem doesn’t exist in isolation or simply emerge out of nowhere. Instead, it is intricately woven into a landscape that involves multiple stakeholders and their interconnected relationships. We refer to an established network of partners and value chains in an industry as a domain ecosystem.  Today, we witness the constant emergence of new digital ecosystems, each catering to specific needs and offering unique services. When these ecosystems thrive, they disrupt existing business relationships within their respective domains. The introduction of a new digital ecosystem and the involvement of its participants bring about changes in the dynamics and positions of various stakeholders within the domain ecosystem (Trapp 2020).

              Multiple digital ecosystems can coexist within the same domain ecosystem, and they can either compete or complement each other. It is also possible for an actor to participate in multiple digital ecosystems simultaneously, assuming different roles in each. In the mobility industry, for instance, there are various digital ecosystems such as Uber and Lyft that offer services in the realm of personal transportation. Flixbus, as a digital ecosystem, has transformed and harmonized the market for long-distance bus travel. Additionally, there are numerous other digital ecosystems focused on mobility services, including those involved in capturing and providing telematic data from vehicles manufactured by different companies.

              ... are only lucrative n the long term

              Creating a digital ecosystem is a complex and time-consuming process that requires more than just developing a software system. It involves a holistic and well-coordinated design approach to continually attract and engage participants.

              This process typically unfolds over several years and starts with gradual growth, which gains momentum as network effects come into play. Looking at successful digital ecosystems like Amazon and Airbnb, we can see that it takes around ten to fifteen years for them to reach a substantial size and become self-sustaining operations. During the building phase, significant investments are made to fuel growth, and it’s only in the later stages that the ecosystem becomes self-sustaining. Therefore, building a successful digital ecosystem requires long-term commitment and a willingness to invest resources. In other words, digital ecosystems cannot be expected to generate a positive return on investment within a short period, like 18 months.

              ... are diverse

              While the provision of ecosystem services is a fundamental principle shared by all digital ecosystems, it doesn’t mean they are all the same. In fact, they can vary significantly in terms of the providers and consumers involved and the assets they focus on, ranging from accommodations to vehicle data or even initiating contacts. Digital ecosystems can adopt various business models, whether they are nonprofit or profit-oriented. They can facilitate business-to-business matchmaking (B2B), serve as intermediaries between private individuals (C2C), or operate with a combination of different relationship types. Government agencies can also play a role in these ecosystems

              The design possibilities for digital ecosystems are nearly limitless, as long as they remain attractive to participants and secure sufficient funding to navigate the startup and growth phases. This is why there is still ample space for the emergence of new digital ecosystems.

              ... are powerful

              Despite all the potential benefits, digital ecosystems can also entail risks, depending on how you look at them. These risks primarily stem from the self-reinforcing network effects that occur when digital ecosystems achieve success and attract a growing number of participants. On the one hand, this can lead to a concentration of power in the hands of the ecosystem operator. On the other hand, it often results in a limited number of successful competing ecosystems, typically only one to three direct competitors. Consequently, profits become centralized within the ecosystem service provider, potentially creating a situation where local providers become highly dependent on the ecosystem.

              Bibliography

              Choudary S (2017). Die Plattform-Revolution im E-Commerce: Von Airbnb, Uber, PayPal und Co. lernen: Wie neue Plattform-Geschäftsmodelle die Wirtschaft verändern.

              Trapp M (2020). Digitale Ökosysteme und Plattformökonomie: Was ist das und was sind die Chancen? https://www.informatik-aktuell.de/management-und-recht/digitalisierung/digitale-oekosysteme-und-plattformoekonomie.html

              Authors

              Dr. Matthias Naab and Dr. Marcus Trapp

              Dr. Matthias Naab and Dr. Marcus Trapp, co-founders of Full Flamingo, an eco-tech startup, aim to leverage the platform economy to maximize sustainability impact.  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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                Ecosystem design: Benefits for all

                Dr. Marcus Trapp
                Dr. Matthias Naab

                To thrive in today’s market, digital platform operators need to consider the interests of all ecosystem participants. By delivering benefits and creating advantages for everyone involved, they can unlock the potential of network effects and scalability. This principle holds true even for a non-profit national health platform.

                In successful systems, the user journey or customer journey is designed to ensure optimal satisfaction at every interaction. Each touchpoint is intentionally crafted to meet users’ needs as much as possible. It’s no surprise, then, that successful providers tend to prioritize user and customer orientation when developing a new system or service.

                When examining new digital business models that operate on platform-economy principles, determining the precise identity of can be challenging. Digital ecosystems like Airbnb, Uber and Schüttflix serve as virtual marketplaces that facilitate the exchange of various “assets” such as overnight accommodations, transport and bulk goods by ecosystem operators. More often than not, these platforms function as multi-sided marketplaces, commonly comprising two sides and occasionally incorporating three or more.

                In each digital ecosystem, some ecosystem partners (providers) offer products and services (assets), while others consume these assets (consumers). For example, Airbnb brokers the exchange of overnight accommodations (asset) between private hosts (providers) and travelers (consumers), while Uber brokers transportation services (assets) between private drivers (providers) and passengers (consumers). The vision of a national health platform presented here follows a similar principle, enabling the brokerage of digital information and services between providers and patients.

                For ecosystem designers, the diversity of participants and multi-sided marketplaces involved in such an environment can have far-reaching implications. It’s easy to focus solely on the consumer journey, but they would do well to pay just as much attention to providers as to consumers and equally prioritize their respective needs. The very thing that attracts consumers to a digital ecosystem is its large number of providers; conversely, an ecosystem’s attractiveness for providers will also grow as the number of consumers increases.

                Balancing participants' interests

                Patients take center stage in the national health platform presented here. In other words, benefits for patients will always be the highest priority. Through the curation and consolidation of information and services, the platform seeks to foster health literacy, streamline information management and empower patients to actively engage in their treatment journeys.

                However, the only way to actually achieve these vital patient-centric benefits is to make certain that providers of healthcare information and digital services also actively participate in the ecosystem.  Consequently, ecosystem operators must ensure an optimal provider journey, one that is as seamless and beneficial as possible. This inclusive approach treats all partners equally, fostering incentives for every participant within the ecosystem.

                Voluntary, not coerced participation

                The importance of generating benefits for all participants within an ecosystem stems from the fact that participation is voluntary and no one can be forced to join. Even if it were possible to enforce participation, such as through government authority, experience has shown that this approach is generally ineffective. Those individuals and/or entities forced to participate often find ways to delay processes or obstruct them in some other manner. Conversely, when all participants derive benefits from their participation, this usually leads to good outcomes.

                The benefits gained from the ecosystem need not be solely monetary in nature. Other advantages, such as access to a larger market, increased visibility of products and services, and access to key data and analytics, can sometimes be more valuable to participants than short-term financial gains. In a best-case scenario, the advantages accrued by one participant would lead to further benefits for patients. For example, healthcare service providers would greatly benefit from accessing contextual information, enabling them to customize their services to better meet the needs of their target groups.

                Holistic digital ecosystem design

                When digital ecosystems emerge, they typically don’t introduce entirely new services, but rather utilize their own digital ecosystem service to offer a vastly improved experience in ways that revolutionize entire industries. They usually achieve this improvement by cleverly exploiting digital opportunities in ways never seen before in that sector.

                For instance, digital platforms for booking accommodations existed prior to Airbnb’s launch, and transportation services were already being organized before Uber was founded. However, Airbnb and Uber have offered participants so many advantages and so much added value that they have both significantly transformed their respective markets.

                The art of creating a digital ecosystem lies in implementing a holistic design that takes into account the interests of everyone involved. As these ecosystems usually enter an already established market in its respective business domain, it is important to carefully consider which benefits can be created for all relevant participants so that they are sufficiently motivated to participate in the ecosystem. This step is critically important when considering the design of a national health platform, especially given the partially regulated nature of the healthcare market and the presence of strong, established players.

                The introduction of a new ecosystem will undoubtedly transform existing healthcare structures and processes. It’s important to acknowledge that not all changes will be universally beneficial, and some market participants may perceive them as disadvantages. Additionally, there is a risk that the governing organization may exploit its position of power, seeking exclusive benefits from the platform. Such a scenario would undermine the motivation of all other participants and thus endanger the platform’s success.

                Ecosystem design in practise

                In developing the vision for the digital ecosystem presented here, we adopted a methodological framework that ensures a holistic design and integrates the interests and needs of all participants. In order to gain an overview of the status quo, our first step was to assemble and prioritize the actors relevant to the ecosystem. After that, we conducted anonymous interviews with representatives of these participants. We also reviewed publications and analyses and obtained expert assessments, all in an effort to gain a better understanding of the needs, issues and challenges facing individual actors.

                In order to ensure that the ecosystem outlined here generates sufficient benefits to motivate potential participants to actively engage with the system, we created a so-called Motivation Matrix (Nass, Trapp, Villela 2018).  (Nass, Trapp, Villela 2018). Our first step was to examine what benefits each individual actor would garner from the introduction of the national health platform, but also to determine how they could contribute and/or what role they could play in the ecosystem. In addition to benefits and incentives, we also discussed the possible disadvantages that individual actors might encounter as a result of the implementation of the ecosystem and its platform, including disadvantages both real and imagined.

                As mentioned above, a benefit analysis highlights more than just monetary gains, chiefly because the idea of benefits can take on so many forms. By drawing on the Motivation Matrix throughout the entire concept-development process, we were able to determine the extent to which the anticipated expectations of various actors interested in participating in the ecosystem could be fulfilled. If and when the expectations of key actors were not met, we redesigned the ecosystem accordingly in an iterative process. The result is a benefit model associated with the national health platform presented here. This model makes one thing quite clear: even in a healthcare system characterized by diverse authorities, significant diversity and special interests, it is possible to craft a vision that generates added value for all participants while also creating tangible benefits and generating welfare effects

                Tangible Ecosystem Design (TED) method

                Digital ecosystems are significantly more complex than software systems operating under the control of a single company. The implications stemming from technology, business, and legal aspects are notably harder to anticipate when designing products and services that will be exchanged across multiple companies and sectors

                The multitude of diverse participant categories results in complex relationships, making it challenging to assess the impact of even the slightest change on the entire ecosystem. This is what makes it so challenging – especially in the design phase – to get a “big-picture” overview of the ecosystem. The big picture, however, is the most important tool when communicating with potential participants about diverse aspects (business, technology, legal) and seeking to form a common understanding as quickly as possible.

                The “Tangible Ecosystem Design” method takes on precisely these challenges and encourages cooperation in the process of defining, designing and analyzing a digital ecosystem. Participants take part in workshops where they model a digital ecosystem using Playmobil® toys and other templates, all of which serve to make the concept more tangible and provide hands-on experience in the true sense of the word.

                Bibliography

                Nass, C, Trapp, M, Villela, K (2018). Tangible design for software ecosystem with Playmobil®. NordiCHI ’18: Proceedings of the 10th Nordic Conference on Human-Computer Interaction. September 2018. 856–861.

                Koch, M, Krohmer, D, Naab, M, Rost, D, Trapp, M (2022). A matter of definition: Criteria for digital ecosystems. Digital Business 2, 100027.

                Authors

                Dr. Marcus Trapp and Dr. Matthias Naab, 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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                  Creating vs. brokering editorial content: Where does the content come from?

                  Prof. Dr. Laura Schulte

                  The vision of a national health platform outlined in the “Trusted Health Ecosystems” project raises questions about the origin of the content and services offered there. A demand-driven offering requires a diverse range of information and services, which a single provider may struggle to fulfill alone. However, the platform operator does not have to create the content on their own. The following considerations explore whether the platform operator should generate their own information or focus on facilitating third-party information.

                  The challenge

                  The dissemination of information involves certain legal requirements that differ in principle depending on who authors the content. The question of attribution depends on the perception formed by users of an information offering regarding the authorship or responsibility for the content. Relevant legal requirements in this context may involve preventive obligations to verify the accuracy of content, obtaining permission for third-party content, provider identification obligations, and the removal of unlawful content.

                  For most information offerings, it is assumed that there is no obligation to check the accuracy and legality of third-party information in advance. However, the provider may be required to do so if there are indications of a potential violation of the law. The situation is different when the provider adopts third-party content as its own, especially if it appears that the provider has independently verified the information or deemed it correct on another basis.

                  In addition to these liability considerations, the trade-off involved with generating one’s own content versus relying on third-party content and service offerings is also relevant with respect to the legal justification of the proposed national health platform. It’s important to take into account that opting to create original content, especially by a primarily publicly funded operator, could affect the range of opportunities available to private sector actors and potentially put market-active companies at a disadvantage. State information initiatives are always subject to the condition that they must serve a governmental purpose, among other requirements (see The state as a provider of information).

                  The distribution of quality-monitored health-related information is clearly in the interest of health education and, by extension, in the interest of state healthcare policy. However, as of today, there is no state-issued mandate or explicit legal assignment of tasks regarding the operation of a national information hub in Germany.

                  Background

                  The first question that arises – irrespective of copyright attribution issues – involves identifying who is responsible for the information provided through an external entity. This can include a legal entity that has obtained the information through a licensing agreement or other arrangements with third parties, for example.

                  From a German legal perspective, online information offerings are classified as telemedia services and are subject to the regulations specified in the German Telemedia Act (TMG). According to § 5 TMG, all telemedia services are required to disclose the provider’s information in an imprint or legal notice. To the extent that a telemedia service offers journalistic or editorial content, it is required to appoint an individual who will be held legally responsible for the content, separate from the information platform itself.

                  These transparency obligations serve to identify an institution or individual against whom claims can be pursued in the event of legal disputes. However, being a provider doesn’t necessarily imply that all information or content must originate from that same provider. Being identified as a provider is initially a formality designed to to ensure that the responsibility for each telemedia offering is clearly delineated. It is crucial to distinguish between responsibility for the technical platform and responsibility for the content disseminated on that platform. Although a single entity may be held legally responsible for both aspects, this is not mandatory.

                  Providers, as defined under the German Telemedia Act, can include institutions or individuals who have had no substantive influence on the information and merely offer it as third-party content. The provider thus serves as the primary point of contact for their own as well as third-party content. However, variations emerge in terms of responsibility, including the ability to claim removal or seek damages in cases involving the publication of unlawful or false content.

                  In principle, the entity responsible for creating the content, such as the author of a text or the organization behind a study or figure, should assume primary responsibility for it. From a legal standpoint, the operator of an information offering is not directly liable for third-party content. Initially, liability applies only to their own content, not to third-party content.

                  From a legal point of view, the distinction between one’s own and third-party content depends on how the content is visibly attributed. Authorship is not relevant in this context; what matters is how users encounter the information. If there is no clear distinction in an information offering, users typically assume that all information either originates from the platform provider or that the provider adopts third-party content as their own.

                  Third-party content is considered as such only when users can clearly recognize that the online content does not originate from the provider and that the provider does not wish to assume responsibility for it. A reference to its third-party nature can be made by exercising transparency in indicating a different contact or an external source for specific content.

                  Past experience shows that private or civil society actors are indeed capable of generating and disseminating relevant information themselves. Given this, it seems advisable for the national healthcare platform to make health-related information from third-party providers easily accessible to the public while leveraging both state and private sector or civil society resources. In sum, the platform operator should not create and disseminate their own content.

                  “The national health platform should limit itself to bundling and organizing third-party content.”

                  Prof. Dr. Laura Schulte

                  From a practical perspective, it will be important to consider how third parties can be motivated to make their content available for further distribution on the platform. Presumably, third parties could be enticed to contribute their content if they are provided a high-quality environment in which they are credited as the source of the information.

                  Moreover, a clear definition of guidelines for the inclusion of content and general procedures is crucial. This includes determining how the information should be presented and how frequently updates should occur. In such an environment, offering multiple equivalent options or information can provide users with a comprehensive and unbiased selection to choose from.

                  Conclusion

                  Aside from legal issues, the decision to adopt and offer information as proprietary content is primarily a strategic one. Providing one’s own information usually involves more significant effort, whether this means creating or acquiring relevant content. Handling third-party content requires less production-oriented effort but involves considerable effort in terms of coordination and alignment activity. The desired quality level is thus essential.

                  From the perspective of competition law, adopting an open market approach and offering third-party content is preferable to claiming it as proprietary or creating it from scratch. This approach helps prevent potential infringements on the fundamental rights of information providers (see The State as a Provider of Information). The national health platform should therefore focus on bundling and organizing third-party content and refrain from engaging in the thorough examination of specific content, modifying content, or granting extensive usage and exploitation rights to the platform operator.

                  Fact or value judgment?

                  The responsibility for editorial content depends, among other things, on whether the content is classified as factual information or a value judgment – both of which are fundamental to the national health platform. Factual information is objectively true or false, which means the provider bears the risk of disseminating information that is factually incorrect. There is no legitimate interest worthy of protection in spreading false information. Such content must therefore be promptly removed or corrected once so identified. Value judgments, on the other hand, are not subject to objective evaluation. They are subjective opinions that cannot be labeled as “true” or “false.” This gives information providers more leeway in terms of managing content on the platform.

                  Challenges arise when dealing with mixed forms, especially when opinions are based on verifiable facts. Information providers must therefore carefully monitor the content on their platform and address complaints appropriately (Hofmann, 2022).

                  Providing information to the public always involves the risk that some information may, at a later date, be found false or misleading. This risk applies to both self-generated content and information obtained from third parties. In order to manage this risk effectively, precautions can be taken for both self-produced and third-party content.

                  (Published on 27.09.2023. The statements in this article refer exclusively to the legal situation in Germany. They represent a guideline and not individual legal advice that goes beyond the Trusted Health Ecosystems project.)

                  Bibliography

                  Hofmann F (2022). Lauterkeitsrechtliche Haftung von Online-Plattformen. Die neuen Transparenzvorgaben im UWG 2022 im Kontext lauterkeitsrechtlicher Plattformregulierung. in: GRUR Gewerblicher Rechtsschutz und Urheberrecht, Volume 124, June 2, 2022 (11/2022), pp. 780 et seq.

                  Author

                  While completing her doctoral studies, Prof. Dr- Schulte gained experience in the field of constitutional law as a research assistant. Her doctoral thesis focused on data protection law, and she conducted further research on this subject at various institutions, including the Queen Mary School of Law in London. From 2020 to 2023, she was employed as an attorney at BRANDI Rechtsanwälte in Bielefeld, specializing in IT and data protection law. Since August 2023, she has held the position of professor of business law at the Hochschule Bielefeld.

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                  When developing a structural model for a prospective national health platform, it seems reasonable to assume, at least at first, that some kind of state-run service would be the most ideal provider. We should not forget, however, that the provision of information by the state – which we define as the communication of a range of information, warnings and recommendations – is subject to specific legal standards and guidelines. In the following, we examine the extent to which information can and should be provided by the state, if at all, and under what circumstances it is even possible and/or advisable to operate a national health platform in the form of a state-run information service.

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                  Ownership: Public or private?

                  When establishing a national healthcare platform, it is crucial to identify a suitable legal structure that fulfills all the necessary requirements and effectively supports the ecosystem in which it operates. In terms of ownership, a number of different options are available, each involving a variety of advantages and disadvantages. The first question to arise at this point is whether the platform should be operated by a public or a private-sector actor.

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                  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.


                    Ownership: Public or private?

                    Prof. Dr. Laura Schulte

                    When establishing a national healthcare platform, it is crucial to identify a suitable legal structure that fulfills all the necessary requirements and effectively supports the ecosystem in which it operates. In terms of ownership, a number of different options are available, each involving a variety of advantages and disadvantages. The first question to arise at this point is whether the platform should be operated by a public or a private-sector actor.

                    The challenge

                    The tasks and services involved in a national health platform are complex and diverse. It is therefore absolutely essential that the platform ecosystem be set up in such a way that it can address each task and manage each service in a flexible manner, including any future tasks and services not yet identified today. Herein lies the challenge associated with finding the optimal legal structure for such an ecosystem. In any effort to do so, the following aspects must be taken into account:

                    Requirements

                    Alignment with the common good

                    In principle, the ecosystem should not be commercially oriented. Instead, it should operate on a not-for-profit basis. All forms of revenue generated within the ecosystem should be used to extend the system itself and develop it further.

                    Flexibility

                    The ecosystem needs to be able to perform as yet unidentified tasks. It should therefore be open to ongoing development and innovation. In addition, both state and non-state actors should be able to work together side-by-side in the ecosystem.

                    Transparency

                    The actions, decisions and financing of the ecosystem, particularly when it fulfills a legal or public service mandate, should be transparent to the general public.

                    Considering these requirements, two key questions arise regarding the organizational form of the ecosystem:

                    1. Should an existing legal structure be utilized or should a new legal structure be created?
                    2. Should the legal structure be rooted in public or private law?

                    While utilizing an existing legal structure is a possibility, creating new legal structures would be more appropriate, given the need for innovation and multifunctionality within the ecosystem. Regardless of whether the ecosystem is governed by public or private law, it is important to distinguish between legal forms with and without legal personality. Legal forms organized under public law, which include the type of public institution known in Germany as an Anstalt des Öffentlichen Rechts, are privileged in a number of ways, for example with regard to their financing. On the other hand, they are also subject to stricter legal obligations than companies organized under private law, for example, in terms of the transparency of their decision-making. In addition, enterprises organized under public law are only permitted to integrate private actors uinder certain instances, which would make it even more difficult to achieve the goal of implementing the most inclusive ecosystem possible. With public enterprises, the focus is also generally on the realization of a public-oriented goal or public-service mandate, which contrasts significantly to primarily for-profit enterprises.

                    Irrespective of the question as to whether the ecosystem’s structure should come under public or private law, we can generally distinguish between legal forms that have their own legal personality under the law and those that do not. Legal forms that do not have their own legal personality include, for example, partnerships (Personengesellschaften) and those municipal agencies known in Germany as Regiebetriebe, which are publicly owned and operated. Considering the allocation of multiple complex tasks within an ecosystem, it becomes apparent that legal forms lacking independence are unlikely to be suitable as potential ecosystem structures. This is particularly important as stakeholders need the ability to independently undertake legal actions, including entering into contracts with service providers. On the other hand, corporations (Körperschaften) are recognized as independent legal entities with the capacity to hold rights and obligations. The legal capacity to hold rights and obligations will thus constitute an indispensable prerequisite for the structure of the ecosystem.

                    Background

                    In principle, a distinction can be made between two forms of legal association: on the one hand, partnerships – e.g. the civil-law partnership – and, on the other hand, corporations – e.g. the association with legal capacity, the stock corporation or the limited liability companies. In general, there are two forms of legal association, namely partnerships (e.g., a Gesellschaft bürgerlichen Rechts or “GbR” under the German Civil Code) and corporations (Körperschaften), which include associations that have been granted legal capacity, stock corporations and limited liability companies.

                    Partnerships (Personengesellschaften) are generally not granted full legal capacity, which means they are restricted in their ability to acquire and exercise rights. In addition, they are at their core focused on the natural persons behind the partnership. This factor tends to make it more difficult for actors to move in and out of a company. In other words, considering the overarching objective of the national health platform in Germany, the reasonable conclusion here would be that partnerships are fundamentally unsuitable as a structural form for the ecosystem.

                    Corporations (Körperschaften) are permanent associations of persons for the purpose of achieving a function that goes beyond the individual. In contrast to partnerships, they operate independently of any changes with regard to individual members. Most corporations are legal persons, which means they can be bearers of rights and obligations, that is, they can enter into contracts. Corporations can also be organized under both private and public law.

                    Public corporations (Körperschaften des öffentlichen Rechts) are associations created by the act of a sovereign state and tasked with carrying out a public service. These corporations are owned by their members, who have a significant influence on policy and decision-making. Membership can be voluntary, but in some cases it can also be compulsory by law.

                    Organizational forms under public law are not available to everyone, however. Instead, they serve exclusively to fulfil a public task or statutory mandate. Accordingly, corporations under public law have certain unique powers and privileges. In particular, they can exercise public authority within the scope of their respective statutory mandate.

                    The downside of this privileged public position is a relatively low degree of flexibility, at least in practical terms. For example, as government or quasi-government institutions, they are obliged to comply with fundamental rights. Indeed, corporations under public law are frequently rooted in a legal basis. This means that any change in orientation, competency or task may require an adjustment to their legal basis.

                    Public law institutions (Anstalten des öffentlichen Rechts) are aggregations of material resources (e.g., buildings, equipment) and personal resources (personnel) brought together for the purpose of managing a public institution. They are legal persons to whom certain tasks have been assigned, whether by law or by statute, and who have also been entrusted with fulfilling a public mission. As a rule, these public institutions and/or their services are placed at the disposal of citizens. Some examples of institutions under public law in Germany are public broadcasting corporations, universities and savings banks. These public law institutions have their own legal personality that allows them to carry out their activities independently.

                    Foundations (Stiftungen) can be organized under both private and public law. In general, foundations are designed to enable the management of assets for the benefit of specific purposes. Foundations under public law are usually created by the state via some kind of law or decree, which makes their establishment and subsequent development a rather bureaucratic process. It is also relatively difficult to integrate private-sector actors, which can be financed by a foundation, but only integrated into its decision-making processes to a limited extent. A foundation under public law is financially dependent on public budgets and grants. In practical terms, this means that it is comparatively difficult to secure a foundation’s long-term financing and thus its long-term operation. Indeed, the performance of such a foundation is likely to be directly dependent upon each new government’s budget.

                    “For the role of operator, having the status of a legal person under private law provides flexibility and makes it possible for private and state actors to work alongside one another.”

                    Prof. Dr. Laura Schulte

                    Organizational forms under public law thus offer very little versatility and are therefore not well-suited to serve as operators of a national health platform. They are frequently rooted in legislation, which means that any increase in their tasks or competencies may require a time-consuming amendment to the law. Furthermore, all forms of organization under public law are directly obliged to comply with fundamental rights.

                    The participatory rights of third parties, such as service providers in the health care sector, can also be partially derived from a public law institution’s binding obligation to comply with fundamental rights. Furthermore, public institutions are subject to certain requirements when it comes to any competitive action they undertake, and some of these rules may be stricter than those that apply to non-governmental actors (see The state as a provider of information: What is the government allowed to do?). And, finally, it is often difficult to integrate private actors into organizational forms operating under public law.

                    It should be noted, however, that state actors – which include federal, state and municipal governments as well as their individual subdivisions – can also take advantage of organizational forms under private law. In practice, this means that if and when government agencies are participants in the ecosystem, it does not automatically follow that the ecosystem must have a legal structure under public law. The potential legal forms for the ecosystem under private law in Germany include an association (Verein), a limited liability company (GmbH) and a stock company (Aktiengesellschaft or AG).

                    Overview - Legal structures under private law in Germany

                    Association (Verein)

                    In Germany, a Verein is considered to be a voluntary, long-term association of several persons who come together in pursuit of a particular purpose. In principle, state actors and private-sector actors can work side-by-side in a Verein.

                    In the case of a Verein, it is only possible to limit liability vis-à-vis third parties to a certain extent. In particular, we should take note here of the general personal liability of the members of the executive board – including the entirety of their private assets – vis-à-vis third parties, at least to the extent that the Verein is held responsible for damages to third parties. The question of how the ecosystem would be financed in the form of a Verein raises some additional challenges; above all, it is likely that membership fees would be insufficient to provide the project with a continuous flow of adequate financial means, especially in its initial phase.

                    Limited liability company (GmbH)

                    A GmbH is a limited liability company that has its own legal personality and acts as a legal entity via its own corporate bodies. In principle, the liability of a GmbH is restricted to the level of company assets. Shareholders in a GmbH can be natural persons or legal persons. Although the shareholders have a share in the GmbH’s assets, they do not assume any personal liability as a result of their participation in the company.

                    Limited liability company (non-profit GmbH)

                    A non-profit GmbH is a special form of limited liability company. A non-profit GmbH combines the business advantages and framework of a GmbH with the advantages of non-profit tax law, thus making it an attractive legal form for the social sector. However, the earnings generated by the company may be used solely in the service of achieving the company’s non-profit objectives.

                    Stock company (Aktiengesellschaft or AG)

                    A stock company known as an Aktiengesellschaft (AG) typically unites a large number of shareholders who have invested their capital in the company in return for dividends taken from the income it generates. The profit-driven mandate of an AG is simply not in line with the non-profit objectives of the ecosystem.

                    Stock company (non-profit stock company)

                    German law also recognizes companies known as gemeinnützige AGs or gAGs, which are stock companies not aimed at making a profit. The focus on non-profit objectives – such as the promotion of science and research, public health, user information and consumer protection – is rewarded in the form of tax breaks in favour of the gAG. The downside of the special tax status of the gAG is the relatively strict set of regulations associated with non-profit tax law. It should be noted, in particular, that a gAG’s non-profit status would be jeopardized if more than half of its capital were used to finance its administration and fundraising, or if the commercial business operations of a gAG were to enter into competition with non-advantaged, for-profit businesses of the same or similar type to a greater extent than is unavoidable when fulfilling the tax-privileged purposes.

                    Otherwise, the legal requirements determining the organization of a gAG correspond to the provisions applicable to a regular AG. In particular, the gAG also has an executive board, a supervisory board and an annual general meeting. The executive board is responsible for the gAG’s management, which must be aimed towards the exclusive and direct fulfilment of the legally defined objectives of the gAG.

                    Holding company

                    It is possible for the ecosystem’s individual services to be operated by different companies (Gesellschaften), each with a different legal form which, however, could be brought together under the common umbrella of a holding company (Holdinggesellschaften). A holding company is a structural form whose main purpose is to hold an interest in one or several legally independent companies on a long-term basis.

                    There are two distinct types of holding companies that could function as “umbrella organizations” for the ecosystem under consideration here: an operative holding and a management holding. An operative holding is comparable to a parent company (Mutterkonzern) upon which subsidiaries are dependent in terms of strategy and personnel. In contrast, a management holding has no operational business of its own, but still determines the strategic objectives of its subsidiaries.

                    The most significant advantage of this type of holding is flexibility, as each subsidiary is able to develop strategies for its own field of business. As a legal structure, the holding company is not regulated by German law and is therefore not bound to a specific legal form. In fact, holding companies are frequently operated in the legal form of a limited liability company (GmbH) or stock company (AG).

                    Conclusion

                    In order to effectively pursue its objectives and have the legal capacity to act, the ecosystem must have the ability to bear rights and obligations. This means that any legal structure that does not have legal capacity should be automatically ruled out as an option. Partnerships, for example, do not meet the requirements of a participatory infrastructure for the health care system and should not be considered as a legal entity with ownership of the prospective national digital ecosystem.

                    While a structure under public law is technically possible, it would pose challenges for private-sector actors when it comes to participating in the project as a whole. To achieve the broadest possible level of participation and a high degree of flexibility, the most ideal organizational framework would therefore involve a legal structure under private law. This would offer a relatively large degree of flexibility with regard to structural adjustments and the cooperation of both private and state actors on the project.

                    Furthermore, considering the diverse range of functions performed by the ecosystem, a holding structure appears to be an ideal choice. Under this structure, a parent company would manage subsidiaries, each of which could undertake different tasks within the ecosystem. This allows for efficient coordination and management of the ecosystem’s various functions.

                    (Published on 27.09.2023. The statements in this article refer exclusively to the legal situation in Germany. They represent a guideline and not individual legal advice that goes beyond the Trusted Health Ecosystems project.)

                    Author

                    While completing her doctoral studies, Laura Schulte gained experience in the field of constitutional law as a research assistant. Her doctoral thesis focused on data protection law, and she conducted further research on this subject at various institutions, including the Queen Mary School of Law in London. From 2020 to 2023, she was employed as an attorney at BRANDI Rechtsanwälte in Bielefeld, specializing in IT and data protection law. Since August 2023, she has held the position of professor of business law at the Hochschule Bielefeld.

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