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Digital Health – Patient engagement as a key to success

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Intro

To build trust for patients, I think it’s really important to involve patients in the design of digital healthcare systems.

How should patients be involved in the realization of a national health platform?

Patients should be involved in the realization of any national health platform. It is, first of all, a moral imperative. But it’s not just a moral imperative. It is also a business case for national health platforms that aim to deliver better health, to create those platforms with those who receive the healthcare. So, if you want to have good outcomes for patients, it’s important first to know what the outcomes patients want, and to build your health platforms around those needs. It is logical, and it’s also much more efficient.

How can digital platforms promote patient participation?

Digital health platforms have an enormous promise for patients because they can equalize and improve access to own health information. It can improve the patient’s understanding of their own health journey, from before becoming a patient to throughout their care. And I think that’s really important because it normalizes the participation of the patient in their own care, and it facilitates the dialogue between caregivers and patients.

What is the aim of “The Patient Organisations’ Manifesto”?

In the whole concept of patient empowerment, patient involvement, patient engagement and patient design, the common element is the patient. “The Patient Organisations’ Manifesto” is a tool, a vision for the future that we as a patient community created together with our members and the wider stakeholders that we’re engaged with in a true co-creation way to say: “This is what we want the future to look like for patient organizations.” Healthcare can no longer be done without patients. Patient empowerment is a concept that brings literacy, but also inviting and giving the tools to patients to participate in their own care. Patient engagement is a communication with patients about things that concern them. Patient design is about co-creating health tools with patients and bringing that voice and incorporating it into how things are done. But the whole broader concept of patient involvement encompasses all of them as parts or enablers into a democratic principle of patient communities being active participants and co-deciders in the way healthcare systems deliver care for patients.

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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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    Conceptual considerations: an overview

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

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

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

     

    Brokering trustworthy health information and services

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

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

    Platform operator

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

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

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

     

     

    Information and service providers

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

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

    Pathway Model Creators

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

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

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

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

    Providers of contextual information

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

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

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

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

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

    High-quality collaboration

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

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

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

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

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

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

    Find, understand, appraise and apply

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

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

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

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

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

    Additional benefits of the national health platform

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

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

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      Benefit model for a national health platform

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      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.

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      Dr. Sebastian Schmidt-Kaehler, Dr. Inga Münch

       

       

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      Discover more, search less – prototype of a national health platform

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

      Find out more

      Benefits catalog
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        Invest in benefits: Financing models for health ecosystems

        Dr. Sebastian Krolop
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        Dr. Marko Queitsch
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        Realizing the vision of a national health platform as outlined in the Trusted Health Ecosystems project could generate financial benefits at many different points and help improve the overall economics of the healthcare system. However, this will require a sustainable and independent financing model that can provide the necessary flexibility for the initial development process, ongoing operations, and future updates and expansions. The solution most likely lies in a combination of different financing approaches.

        Digital ecosystems can provide benefits in the healthcare sector in a variety of ways. For example, networking all relevant actors and using digital data creates transparency and facilitates personalized care offerings. Fully integrated healthcare offerings improve the user experience. Moreover, simplified procedures and digital support make the work of healthcare staff easier.

        A recent McKinsey analysis shows just how great the financial benefits of a digitized healthcare system are likely to be, estimating the economic potential in Germany at around €42 billion per year (McKinsey & Company 2022). Digital ecosystems are not the only means by which to tap this enormous potential, but they could make an important contribution. For example, they could accelerate the digitalization process, while also linking disparate offerings and digital services together in a time- and cost-efficient way.

        The OECD has also stated that facilitating access to high-quality health information, as an ecosystem modeled on the product vision outlined here would do, can have cost-saving effects. It estimates that between 3% and 5% of healthcare spending could be saved or used elsewhere through improved health literacy. For Germany alone, this would correspond to a sum of €9 billion to €15 billion per year.

        However, depending on the project size, the investment needed to support the initial development, deployment and operation of such health ecosystems can in some cases be quite substantial. Ongoing operations also generate costs. This raises the question of what financing models are suitable for creating such an ecosystem and supporting ongoing platform operations, including future updates and expansions.

        Requirements for national health platform financing models

        A variety of financing models are conceivable for health ecosystems, each in turn entailing a number of advantages and disadvantages. In considering these options, it is important to keep in mind the core principles intended to guide the national health platform’s operations (see Objectives and conceptual premises):

        • Nonprofit model. The platform’s operation should not produce profits; any revenue generated will instead fund the platform’s further development. This has an effect on the potential legal form taken by the ecosystem (see Ownership: Public or private?). Of course, this stipulation applies only to the platform operator. Health information or service providers participating in the ecosystem can certainly function on a for-profit basis.
        • The ecosystem should act neutrally and independently of the particular interests of individual actors. This applies not only to healthcare providers and insurers, but also to private-sector companies with commercial interests. In practice, this rules out a number of funding options, such as advertising-supported operations.
        • The process of building and scaling an ecosystem requires time, and necessarily takes place in an environment of fast-moving technological change. Financing models should accordingly be designed for the long term.
        • Since the digital ecosystem will involve participation by private-sector and public-sector actors, and the ecosystem operator will presumably be acting on the basis of a statutory mandate, financing sources should be transparent and comprehensible to all. This will also increase users’ trust in the platform.
        • Open system. The national health platform should be developed as an open ecosystem that allows for links between disparate health providers. A number of features must be created to enable such functions, which in turn will generate ongoing costs – for example, for the development, deployment and maintenance of APIs and other core components.

        Different financing models conceivable

        In selecting suitable financing models, it is advisable to take a differentiated view of the platform’s initial development, ongoing operations, and future updates and expansions. Over this time, these separate phases will be associated with different financial requirements, for which different forms of financing are in turn available:

        Initial development costs. Initial costs are incurred in setting up the basic infrastructure, for example for the IT platform’s technical development, for drafting legal and regulatory concepts, and for integrating the first healthcare providers into the ecosystem. Therefore, one-time basic funding is well-suited for this start-up phase – for instance in the form of grants or other funding from foundations, the government or the ecosystem’s stakeholders. One example of government support for digitalization can be seen in Israel’s National Digital Health Plan. There, the government has allocated a budget of around $300 million for this initiative, in part to build a big data platform containing anonymized health information relating to nearly all Israeli citizens.

        Ongoing operating costs. Once the ecosystem has been established, its ongoing costs must also be covered. This relates to functions such as basic operations as well as maintenance, software licenses, marketing and personnel. These expenses can also be financed through public subsidies derived from taxes or social contributions. However, alternative funding models could also be considered as a means of complementing the independent basic financing. For example, in addition to traditional subscription models, co-op approaches or innovative models such as corporate profit sharing could prove useful.

        • Subscription models: Subscription models have been offered in the media and online retailing sectors for some time. For a regular fee, subscribers get access to news, streamed TV series or music, or other benefits. Membership fees could make a significant contribution to ongoing service improvements, but at the same time could constitute a financial barrier for users, thus increasing social inequality in access to health information. The consequent downward pressure on user numbers would also undermine the platform’s appeal to providers of health-related information and services.
        • Co-op model: Traditional cooperative financing, which is familiar from the banking, housing and agricultural sectors, is increasingly making its way into the healthcare sector in a modern form. The example of the French Welcoop Cooperative shows how a traditional pharmacists’ cooperative has developed into a digital ecosystem for patients, care facilities, hospitals and the pharmaceutical industry. A model of this kind could also create a sustainable and independent funding source for the national health platform outlined here.
        • Innovative financing models: In models such as brand licensing or corporate profit sharing, a portion of company profits are used to support healthcare initiatives. Options range from investing in research and development to funding programs that increase access to healthcare. In the context of the national health platform, participating companies could reinvest a portion of their profits into the ecosystem. No matter what legal form the platform ultimately takes, the operator and the company would determine together how these funds would be used, in order to avoid undue influence.

        Update and expansion costs. Upgrading and expanding an ecosystem includes tasks such as the provision of additional services and interfaces in order to keep the platform appealing to existing users and attract new ones. Financing can be structured in a way similar to that of the initial development and ongoing operation phases (foundations, co-op models), but can also be supplemented by alternative models. The following variants have already been tested in the field:

        • Nonprofit business activities: The platform could pursue supplemental business models that are not primarily connected to its core business. For example, the platform could use its access to data to provide services to healthcare providers, and then use this revenue to fund its own further development.
        • Development on demand: Private healthcare providers that have been able to scale up their services through the ecosystem could also participate in funding platform updates. For example, on the Swiss healthcare platform, called Well, several physician networks are working with the operator to develop an appointment booking and check-in system through the Well app. In order to avoid competing with private-sector providers, the ecosystem operator’s development services could be limited to the platform infrastructure (e.g., interfaces).
        • Transaction fees: Alternatively, private healthcare providers could contribute to the funding stream via the use of their services. For example, they could pay a percentage-based fee to the ecosystem operator – as is done on travel and hotel booking portals – as soon as a service is used.

        Another financing approach familiar from the e-commerce sector is the use of premium models, in which users pay for services that go beyond the basic offerings. However, these are less appropriate in the health setting, because (as noted above) they can limit general access to health information, and thus reinforce social inequality.

        Creative solutions for sustainable financing

        The vision of a national health platform, as is being developed in the Trusted Health Ecosystems project, promises many benefits. It has the potential to promote health literacy, create personalized care options and ultimately reduce healthcare costs. This great economic potential is offset by considerable financial challenges, because financing an ecosystem of this nature will require substantial investment not only to pay for its initial development, but also to cover the costs of ongoing operations and future updates.

        The overall scope of these costs will depend on a variety of different factors. A more precise estimation will be possible only after a detailed planning process (see Initial thoughts on the technical structure of the national health platform). However, the financing of a national health platform with a strong civil society component will in any case require creative solutions that are shaped by the financial needs arising from the individual development phases, and which will provide the platform with sufficient financial flexibility.

        Ultimately, the choice of funding model will depend on the national health platform’s specific requirements and goals. These include a focus on the common good, independence from special interests, sustainability, transparency and system openness. An integrative approach that combines different funding sources is likely to achieve the best results, while also supporting the ecosystem’s long-term development and ensuring its sustainability.

        Bibliography

        Eichler K, et al. (2009). The costs of limited health literacy: a systematic review. International Journal of Public Health 54. 313–324.

        McKinsey & Company (2022). Digitalisierung im Gesundheitswesen. Die 42-Milliarden-Euro-Chance für Deutschland. URL: https://www.mckinsey.de/news/presse/2022-05-24-42-mrd-euro-chance

        Ministry of Health, State of Israel (2018). The Government has approved a National Program for Promoting the Digital Health Field. URL: https://www.health.gov.il/English/News_and_Events/Spokespersons_Messages/Pages/25032018_2.aspx

        World Health Organization (‎2019)‎. Interview with Jens Spahn, Federal Minister of Health, Germany. Public health panorama 5 (‎2)‎. 163–165. WHO. Regional Office for Europe. URL: https://apps.who.int/iris/handle/10665/327036

        Authors

        Sebastian Krolop, MD, PhD, MSc, is an expert with 25 years of professional experience as an emergency physician, and is additionally an economist, strategist and innovator. His areas of expertise include the transformation and financing of digital technologies in international health systems. He served as a board member of the Healthcare Information and Management Systems Society (HIMSS) in Chicago, IL, United States, where he oversaw areas including strategy, operations, startups and the company’s own digital ecosystem platform, called Accelerate. Previously, he was partner and industry lead for life sciences and healthcare at Deloitte. Krolop is the author of the annual Krankenhaus Rating Report, and has contributed as author and co-author to more than 40 books with a focus on the financing and digitalization of health ecosystems.

        Dr. Marko Queitsch studied industrial engineering, and earned his doctorate in business management. He has conducted research as an economist on digital communication issues in healthcare, and has developed digital health solutions in the private sector. As head of business development for Weisse Liste gGmbH, a wholly owned subsidiary of the Bertelsmann Stiftung, he designs nonprofit business and financing models. In addition, he supports the Bertelsmann Stiftung’s Trusted Health Ecosystems project in the key areas of operating and financing models, as well in data and software architecture issues.

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        What can we learn from international platform solutions?
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        National health platform: Governance and legal framework
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        National health platform: The state as a provider of information
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          National health platform: Governance and legal framework

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          In principle, establishing and developing a national health platform on the basis of an existing legal framework is a feasible option. However, given the innovative nature of the platform and the diversity of its anticipated tasks, it seems advisable to create a new legal structure, or perhaps even multiple ones, for its operational framework.

          What factors should be weighed when selecting the appropriate legal structure?

          When determining the legal framework for the national health platform, it is important to consider what features the platform should have. This is because German corporate law specifically provides for a wide variety of legal forms, each carrying its own set of advantages and drawbacks. In any case, it’s important to ensure the platform’s operational capability. Whatever the chosen legal form, it should grant the platform a legal personality, thus enabling it to bear rights and responsibilities.

          It should also be aligned with the platform’s mission statement, which targets the common good, as opposed to purely profit-driven objectives. Here, too, the German legal context provides for legal structures that are more or less committed to this ethos.

          Finally, and perhaps most importantly, the chosen legal form should provide flexibility. The platform is expected to take on evolving roles and tasks, some of which may not be clearly defined at its inception. Furthermore, the selected legal framework should facilitate collaboration between both private and government organizations within the platform.

          Which organization could assume responsibility for the platform?

          In principle, establishing and developing a national health platform on the basis of an existing legal framework is a feasible option. However, given the innovative nature of the platform and the diversity of its anticipated tasks, it seems advisable to create a new legal structure, or perhaps even multiple ones, for its operational framework.

          What are the pros and cons of a private-law versus public-law form of governance?

          Publicly governed legal structures are typically accessible only to governmental entities. In other words, not everyone can opt for such a legal framework but, rather, only entities at the federal, state or municipal levels of government. While public legal structures do come with certain privileges, including advantages in financing and decision-making processes, these privileges also entail certain drawbacks. Most notably, these kinds of legal structures tend to be less adaptable and flexible. This means that when such projects take on new responsibilities, adjustments must be made to their legal basis. Furthermore, public and private actors cannot easily collaborate under the umbrella of a publicly governed legal structure.

          What recommendations can be derived from this for the organizational framework of a national healthcare platform?

          It’s important to choose a legal form for the national health platform that provides for operational viability, that is, a form that grants the platform a legal personality. Publicly governed legal forms seem to be less suitable for such a platform. Instead, privately held legal structures, which confer legal personality, seem preferable. Another option might be to allocate different platform responsibilities or business domains to distinct entities or businesses, each of which adopts the appropriate legal form. These companies can then, in turn, be brought together under the common umbrella of a holding company.

          Disclaimer

          The statements made in this interview are relevant exclusively to the German legal context. They offer a framework for guidance and should not be interpreted as providing legal counsel beyond the scope of the Trusted Health Ecosystems project.

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          While completing her doctoral studies, Prof. Dr. 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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            National health platform: The state as a provider of information

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            If we view the national health platform as a central node of a network that involves government actors, it must adhere to the legal criteria governing state bodies.

            What constitutes government public service messaging, and how does it relate to the concept of a national health platform?

            Essentially any form of activity by which the state communicates information to the public can be regarded as a form of government public service messaging. This can include, for example, providing informing about specific topics such as certain medical conditions or endorsing behaviors like walking 10,000 steps a day. It also involves issuing warnings about certain products, like the use of specific medical devices. And it doesn’t necessarily matter which government agency is the source of this information. It could come from a federal ministry, a state or regional parliament, or a local government agency.

            Why is government public service messaging subject to specific legal requirements?

            The state’s activity in terms of providing information to the public is subject to distinct legal requirements because government entities typically have access to significantly different kinds of resources for their informational activities compared to privately owned businesses. Government agencies usually attract a great deal of public attention when issuing information and enjoy a certain degree of authority and trust, particularly among patients.

            This means that when, for instance, a federal ministry issues a warning about the use of a specific medical device, this effectively functions as a ban on that product. Citizens are much less likely to purchase the device if the government has officially cautioned against it. In practical terms, government public service messaging can significantly influence market dynamics. It can, for example, impact other providers of digital healthcare services’ fundamental right to occupational freedom.

            What guidance can be extrapolated from this for the governance of a national platform?

            If government actors are to participate in the national health platform, the platform will need to comply with the typically stringent legal requirements that are applicable to state entities. As a rule, this will involve establishing a legal framework. Even if product warnings are not the main focus of the project, the fundamental rights of providers of digital healthcare services could plausibly be affected by such an undertaking.

            This suggests that the national health platform should be run by a non-governmental organization such as a civil society organization that enjoys more flexibility. And this wouldn’t need to rule out public funds as a source of financing, as public financing doesn’t necessaeily dictate that the chosen governance or ownership model be based in public law.

            Disclaimer

            The statements made in this interview are relevant exclusively to the German legal context. They offer a framework for guidance and should not be interpreted as providing legal counsel beyond the scope of the Trusted Health Ecosystems project.

            Content

            Expert

            While completing her doctoral studies, Prof. Dr. 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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            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.


              What can we learn from international platform solutions?

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              How do we create ecosystems that improve the public’s health literacy and promote prevention?

              How do we establish trust in a digital platform?

              In my opinion, it’s important to state how you go about establishing and building trust. This involves two things: For one, there’s clarity. What purpose does the ecosystem serve for citizens? And on the other, it’s important to establish transparency.

              Estonia stands as a notable example, in my opinion. They’ve legislated the specific purposes for which healthcare professionals can access health data, specifying when it’s permissible and when it’s not. They’ve also embraced transparency by allowing citizens to log in to their profile through the Estonian Central Health Information System and Patient Portal to track who has accessed their data.

              What additional elements are necessary to make a healthcare platform appealing?

              Utility is the key element. In the context of health platforms and health ecosystems, the focus is often on creating services that provide added value to both patients and citizens, as well as healthcare providers, such as nurses, caregivers, doctors and more.

              These services are often linked with each other, with a single service benefiting both citizens and healthcare providers.  It’s therefore crucial to develop these services with a user-centric approach and involve users and stakeholders from the outset. Ideally, this approach leads to the creation of a service that benefits multiple stakeholders and operates effectively and efficiently for those providing the service.

              Denmark serves as a compelling example in this context. They actively engage user panels, conduct user interviews and surveys, and collaborate with citizens and healthcare providers to co-create services. This leads to the development of services that not only deliver value but also, due to effective and efficient management, enhance user engagement.

              What objectives should a national healthcare platform strive for?

              The ambition could revolve around establishing ecosystems that boost the health literacy of the population, simplify preventive measures, empower individuals to manage chronic illnesses effectively, and ideally, free up healthcare providers to spend more time with patients and less on administrative tasks. An important concept to consider is the creation of open ecosystems, where third-party providers can offer their services within the ecosystem, insofar as they meet specific quality, transparency and security criteria.

              Israel has successfully implemented such an open ecosystem, with two noteworthy facets. First, health data exchange allows one doctor to access previous treatment information, which facilitates more informed decisions and improved patient care. Second, the involvement of third-party providers within the ecosystem, including startups and healthcare companies, fosters innovation on a national scale. This can prove to be a real boost to the country’s innovation advantage by bundling the innovative power of healthcare companies in creating a platform that makes innovative healthcare solutions more readily accessible to citizens.

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

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                Disinformation in the healthcare sector: Using platforms to combat the infodemic

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                How can we better distinguish good information from the bad? There’s a whole range of things that platforms can do to take a bit of the work off people’s shoulders.

                Where does misinformation and disinformation on healthcare topics originate?

                 Disinformation comes from many, many different sources. If we think back to the pandemic, WHO declared an infodemic in addition to the pandemic, in addition to the health crisis. That means that in addition to the coronavirus, we also had an information crisis.

                And we remember, for example, that some disinformation came to us directly from the White House, for instance when Donald Trump recommended at the time that we drink bleach to combat COVID-19. The same thing happened in Brazil with Jair Bolsonaro. So to some extent, it is governments that have spread disinformation.

                But that’s not the only source. It can come from social media, from people who are uninformed but still spread their opinions. It can come from family WhatsApp channels. And it can even come from journalistic sources, if maybe some newsrooms don’t have enough reporters with health expertise, or don’t have a science team that can work with clinical studies and present them in a comprehensible way.

                In this respect we’ve had a lot of uncertainty, especially during the pandemic, especially in Germany. We remember AstraZeneca and the debate around the vaccine, for example. This means that populations may be uncertain about things, and not well informed. You can easily look at that internationally, and see which countries were very well informed, and which didn’t have much disinformation at all, and where there might have been a particularly great amount of disinformation. You can look at what criteria allow communication spaces to be filled with disinformation, or ensure that trustworthy information travels from A to B.

                How can the healthcare system effectively combat disinformation?

                Ugh, where should I start? The hard thing about the topic of disinformation is that it’s a very holistic issue. What I mean is, you have to address many things all at once. I’ll give you an example. Take Facebook’s timeline. I’m on my Facebook timeline now. That means, two important factors determine whether I have a good information space or a bad information space. And these two factors are, on the one hand, the platform’s algorithm and the issue of how these algorithms work, what content is pushed to the top, what might be particularly strongly promoted, or just ranked lower.

                On the other hand it’s me, the user, who is sitting in front of the screen and has to decide what channels I’m going to follow. Both of these parameters are very important. We know that the platform’s algorithms aren’t particularly good, and that users’ information literacy isn’t very strong either. The whole thing can only work if we have more regulation, for example, by which I mean sensible provisions that regulate the conditions under which these algorithms are allowed to operate at all.

                This is ultimately a task for society as a whole, in which all elements of society really have to do their part to ensure we have a better and more resilient information ecosystem. This also applies to the healthcare sector, and to the actors who are communicating in it. And it raises the question as to whether they have enough training to be disseminating health information,  on social media, for example. And what actors in the sector might be playing a role in which they’re more likely to spread disinformation? What groups exist, maybe coming from alternative medicine communities, that are then playing a big role in spreading it there? In this regard, there are many things that have to happen at the same time for the information environment to improve.

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                Alexander Sängerlaub is the Director and Co-founder of futur eins. He takes a holistic approach to digital public spheres and explores how the utopia of an informed society can be achieved. Previously, he helped establish the “Strengthening Digital Public Sphere” department at the Berlin think tank Stiftung Neue Verantwortung, where he led projects on disinformation (“Fake News”), fact-checking, and digital news literacy. He studied journalism, psychology, and political communication at the Freie Universität in Berlin.

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                  Unlocking success in digital ecosystems

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                  The true appeal of an ecosystem lies in the extensive reach of its participant base.

                  What factors contribute to the success of digital ecosystems?

                  Creating value, incentives and motivation is particularly important in digital ecosystems because they operate differently from traditional business models and rely on multi-sided markets. A prime example of such a market is provided by Airbnb. Here we have Airbnb, the company itself, but there are also those who offer private accommodations, and then, on another side, there are the consumers, the travelers who use these accommodations.

                  All participants interact on this ecosystem voluntarily; no one is coerced. And that’s why, of course, you have to create incentives to entice as many people or organizations as possible to participate in the ecosystem. The true appeal of an ecosystem lies in the extensive reach of its participant base.

                  Could legal mandates compel actors to participate?

                  Mandating certain actors to participate in a digital ecosystem is definitely not a good idea. In scenarios where participation is compulsory, as is the case with other business models, individuals often find ways to participate only superficially or, in a worst-case scenario, disrupt the operation of the digital ecosystem.

                  Successful digital ecosystems have thrived by providing ample incentives to attract participants willingly. When participants engage of their own accord and see the value in their participation, that’s when the ecosystem truly flourishes.

                  How can we harmonize the diverse interests of all participants?

                  While the national health platform primarily serves patients, it also benefits from the involvement of other groups. Of course, conflicts of interest may arise from time to time. That’s why resolving such conflicts among all participant groups is absolutely critical to the holistic design of a digital ecosystem and thus of the national health platform. This ensures that patients’ goals are actually met while safeguarding the interests of other participant groups.

                  What does a holistic design process entail?

                  The holistic design of digital ecosystems involves assessing the consequences of every decision made during the design process on all participant groups. This assessment encompasses three viewpoints: the business implications, the technical implications and the legal implications.

                  Success here depends on ensuring that representatives from all participant groups are involved in the process from the very beginning.  To ensure clear communication with these representatives, we use concrete scenarios, prototypes and real-world examples for illustration purposes. This helps us find the right language in our communication with each target group. The challenge lies in managing the design of the entire system across various levels of abstraction while preserving a comprehensive overview that can be aptly conveyed to all participant groups.

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                  Expert

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

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                    Digital ecosystems: an opportunity for healthcare

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                    While there are risks of international players dominating the German and European markets, for the healthcare sector, it’s particularly important that we establish a digital ecosystem rooted in European values.

                    What opportunities does a national healthcare platform present?

                    I firmly believe that we should embrace the concept of a national health platform because anyone who has ever sought reliable health information online knows that it’s no simple task.

                    Likewise, those who have ventured into the realm of digital healthcare services are well aware of the challenges – it’s not a straightforward, simple, direct or swift process. We are resolute in our belief that a digital ecosystem capable of enhancing information dissemination and expediting transactions can be successfully applied to the healthcare sector.

                    The reality is that such a digital ecosystem does not currently exist. We therefore have a unique opportunity to lead the way, not only in Germany but also far beyond its borders. And we also have the chance to set a positive precedent for a government-led digital ecosystem, breaking new ground in the process.

                    What if our healthcare systems fail to take action?

                    If our national healthcare systems fail to take action, we will undoubtedly have missed a significant opportunity. In the healthcare sector, the established players have not yet achieved dominance, leaving us an opportunity to shape the entire system based on European values. However, it is highly likely that tech giants will enter this field simply because it is so highly lucrative and intriguing for them.

                    Merely establishing a digital ecosystem with basic functionality will not  prove sufficient. To be competitive, we must create a digital ecosystem that is user-friendly, genuinely valuable, and is quick and convenient to use.  Thsi is the only way we can be competitive and hold our own against the international tech giants.

                    How did you envision a competitive platform?

                    We used our proven ecosystem approach to design the national health platform. Together with a team from the Bertelsmann Stiftung, we focused on identifying the core element of the ecosystem we are developing here: communicating reliable health information.

                    We played out this communication of reliable health information through a concrete, comprehensible scenario and continuously evaluated it with participants from various groups. We adapted and refined it as needed, presenting it in formats conducive to productive discussions with these groups. In doing so, we sidestepped a common pitfall observed in other contexts, where abstract, feel-good visions with seemingly boundless possibilities fail to account for challenges.

                    Why did you choose to illustrate these specific scenarios using toys?

                    Yes, we actually used Playmobil cars and Playmobil figures. We applied the Tangible Ecosystem Design (TED) method developed at Fraunhofer IESE.

                    This involves using the ecosystem method, specifically the TED method, to model the entire ecosystem. This allows us to delineate roles within the ecosystem, identify interactions and define relationships.

                    What makes designing a health platform special?

                    Yes, while designing the national health platform, we things that distinguish it from other ecosystems we have observed across various sectors. First of all, of course, the intended target audience – patients – is an exceedingly large group. Health is vital for everyone. And the number of participant groups is significantly higher than what we have observed in other ecosystems.

                    Then, of course, we have the unique situation in the healthcare sector, where significantly more regulations are in place compared to other domains. Naturally, this also has an impact on the design of the digital ecosystem within the national healthcare platform. Finally, we should highlight a key distinction, namely that with a national healthcare platform, we have a governing body that is primarily oriented toward avoiding an undue emphasis on financial interests.

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

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                    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.