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Digital health – The future of health systems

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Intro

Digital health is a key enabler of efficient, high-performing health systems. So what a national health platform does is set the rules of the game.

Can digital health enhance national health systems and what role can digital ecosystems play?

WHO is extremely excited about digital health as a catalyst to strengthen health systems. Many health systems struggle with limited resources to achieve large ambitions. And without tools like digital health to optimize how those limited resources are allocated, how services are delivered on time to those who need it the most, the resources are misspent. And so digital health is a key enabler of efficient, high-performing health systems.

How should national health systems shape digital transformation?

So it’s absolutely critical that digital transformation not happen in a chaotic manner. Over the last two decades, we’ve seen billions of dollars be spent in a discordant way, not achieving the levels of impact and scale that we’ve hoped for. So national health systems and governments need to have a clear vision of where they want the countries to go, as well as an architected plan or roadmap for how that transformation occurs. Once that architectural blueprint is in place, then there is scope for many actors to help advance the goals of that blueprint.

How important are quality, truth and trust in designing digital health care landscapes?

Those are three very important words, quality, truth and trust. Quality means making sure that the content and the standards on which these systems are built are the gold standards, and that’s the role of organizations like the World Health Organization. Truth and trust are things that have been eroded significantly over the past decade with the advent of misinformation and disinformation, fake news, et cetera. And so it’s absolutely critical that we leverage tools like digital health to make sure people have access to truthful, reliable information on which to base the health care decisions they are making.

How can national health systems prevent data monopolies and loss of control?

The national health systems and governments have a strong responsibility to ensure that the sovereignty and privacy of individual data is always protected. The importance of data ownership by individuals and the decisions as to how that data is used must always reside with the individual from whom that data comes. However, in large systems, it’s important that government sets the rules of engagement and the parameters or boundaries within which tech sector and other industry and private sector partners can play so that they support the mission of the public health system.

What role could a national health platform play in the personalized and human-centered health care of the future?

So what a national health platform does is set the rules of the game. It sets the boundaries and the guardrails within which all of the different actors can play together. By setting the vision, by setting the architecture, by selecting the standards, what we do is we enable all of these different solutions and innovations to thrive, not as separate innovations, but together as an interconnected system, ultimately keeping the patient or the individual at the center of all of the different pieces.

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Expert

Dr. Alain Labrique is Director of the Department of Digital Health and Innovation at the World Health Organization. He is the founding director of the Global mHealth Initiative at Johns Hopkins University and editor-in-chief of the Oxford Open Digital Health Journal. An infectious disease epidemiologist and population scientist, he was a professor at the Johns Hopkins Bloomberg School of Public Health until September 2022. Labrique was the lead author of the 2012 Bellagio Declaration on mHealth Evidence and has authored more than 150 publications in top-tier journals, as well as numerous book chapters and technical reports on digital health.

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    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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            National health platform: Editorial content creation

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            The national health platform’s purpose should be to enhance, not replace, existing information services.

            Who bears responsibility for the content on a national healthcare platform?

            When it comes to the question of who bears responsibility for the content provided on a national health platform, it comes down to the nature of the content in question. The platform operator is initially accountable for their own content. However, if the platform operator assumes responsibility for third-party content –  by evaluating it before making it public or by expressing a willingness to take on such responsibility – then the platform operator may be held accountable.

            If an entity other than the platform operator assumes responsibility for assessing content before it is published, this might require a different legal assessment. In such cases, it’s possible that the platform operator could be held liable or share the responsibility for external content. This means that the platform operator must establish a mechanism for users to report false or unlawful information.

            How should the creation of original content be assessed from a competition law perspective?

            Evaluating the creation of original content for a national health platform in terms of competition law is complex, especially when government actors are involved. In principle, government initiatives should only be introduced when a form of market failure is evident. This means either insufficient information is being communicated or information in the healthcare sector is not being adequately transparent.

            Past experience has shown that digital healthcare service providers are quite capable of meeting this demand. The national health platform’s purpose should be to enhance, not replace, existing information services. This should benefit not only users but also providers of digital information services in the health sector.

            What insights can we gain from this for the platform’s content strategy?

            When it comes to shaping the national health platform’s content strategy, it’s important to bear in mind that creating or asserting ownership of content and disseminating it can be, in terms of competition law, challenging to justify, especially when government bodies are involved in the project. In this context, it seems preferable to prioritize the distribution of third-party content, meaning content generated by civil society or private-sector organizations. The providers of such information should be given fair and transparent access to the platform.

            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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              Disinformation in the healthcare sector: Brave new communication world

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              Everything is different. This means that all areas of society have to learn and change, and adapt to the way technological disruptions are shaping this new world of communication.

              How do people stay well informed in the digital age?

              Digitalization has turned the concept of how we inform ourselves and communicate entirely upside down. Society isn’t adapting quickly enough. People still lack the information and communications skills they need to really master these interactions.

              This is first of all a democratizing process, because many more people today want their voice to be heard, and want to be a part of the discussion. And they can do this. But this complete change in the communications landscape also introduces entirely new challenges in terms of regulation, in terms of responsibility, in terms of who the relevant actors are.

              That makes it difficult for us as a society to react quickly enough, because the technological disruption is simply gigantic, and is happening very, very quickly. These days, you can’t expect just to clean up after things by putting together good regulation and approaches, because by that time the world is already changing again, and new things like AI, ChatGPT and Midjourney are all becoming relevant.

              And that leaves society overwhelmed. So almost all social systems have to learn and adapt very, very quickly, whether that means the education system, the political system or the healthcare system. All of them are suddenly part of this public sphere, and of course once there, they have to learn how to communicate professionally and inform people in a way that brings them along. But it’s really not easy to navigate this huge flood of information, and find your way from A to B without somehow falling for or getting stuck on advertisements or disinformation or cat videos, or whatever.

              Can platforms shield against disinformation through quality mechanisms?

              Platforms can make the most important contribution to protecting people from disinformation. If we remember back to the pandemic, there were suddenly completely new information offerings from the various platforms.

              On Google, when I googled COVID-19, a sidebar suddenly came up that gave me quite a bit of relevant information about the pandemic. For example, what the incidence was in my country, or how many people had been vaccinated, or where I could find relevant health information. Google did a good job there of sort of taking me by the hand when I was trying to google information.

              Other platforms approached this differently, sometimes less well. For example, Instagram flagged any post that contained the words “corona” or “COVID-19” in any way, and said, “Watch out, this is about the coronavirus.” Other platforms like YouTube tried to do a better job of curating what showed up in response to keyword searches.

              The moment the platform decides to help people, maybe by curating certain content or adding a separate piece of information that assesses the quality of a source, that’s a huge help. This could be information about the source, explaining why the source is trustworthy, or additional information and links. The question is, how much do people trust this platform, so that we actually have a different outcome.

              Ideally, we’ve learned a lot from the pandemic, and now actually know how to think about all these issues beforehand when building a new platform, for example. For instance by setting up a quality system that determines beforehand what sources are even allowed to be included. This means thinking about a set of rules beforehand that clearly say: This is trusted information, and this is just disinformation that has no place on our platform.

              I think we can learn a lot from what Google has done, and from how YouTube has labeled sources, and from how other platforms have done things like provide additional links. We can use these ideas to be able to offer genuinely high-quality information even in a new communications environment.

              So yes, platforms have a critical responsibility with regard to whether people are leaving the platform informed or disinformed. It has to do with the way they prepare this information, with whether they’re thinking about how the information ecosystem can be secured or curated, and about what additional information they can provide so that users can better decide whether this is a trustworthy source, or just some disinformation crap that they’d be better off avoiding.

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              Expert

              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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                What are digital ecosystems?

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                These are companies that have dramatically changed whole industries, and even entire areas of life.

                What is meant by a digital ecosystem?

                While the term “digital ecosystem” may not be immediately familiar to everyone, we’ve all encountered real-world examples of such ecosystems that have significantly transformed various aspects of our daily lives. Think of Uber, Airbnb, and Amazon Marketplace – these are all names we’re acquainted with.

                Let’s take Airbnb as an example. On this platform, we have private hosts offering accommodations to fellow private individuals. And right in the middle of this interaction, we find Airbnb, playing a crucial intermediary role. This intermediary role is, in fact, the defining characteristic of digital ecosystems, and it’s a common feature shared by all of them.

                This intermediation takes place entirely in the digital realm, and the platform becomes the technical core of our digital ecosystem. To effectively serve the voluntary participants, this digital ecosystem and its platform must be highly scalable. You see, these voluntary participants all expect to gain benefits from being part of this digital ecosystem, and this dynamic sets a self-reinforcing cycle in motion. More and more providers join, attracting more and more consumers. This, in essence, is what gives rise to the frequently mentioned network effects that underpin all business models in the platform economy.

                What’s new about digital ecosystems?

                Digital ecosystems thrive not by introducing entirely novel concepts but by elevating existing ones to new heights. This approach holds significant appeal for consumers as it grants them access to a broader array of offerings than ever before. For providers, it’s equally enticing, offering access to a vast consumer base without the burden of bearing market development costs themselves. Naturally, for the operator of the digital ecosystem, it also proves highly profitable.

                Yet, in the public sector, the presence of successful digital ecosystems remains notably scarce. Especially within government agencies, there’s a dearth of prosperous examples. It’s imperative that we harness the potential of this successful paradigm for public sector entities and leverage the capabilities of the platform economy accordingly.

                And what are the risks?

                Certainly, where significant benefits abound, risks often lurk in the shadows.  Typically, a digital ecosystem is launched in one country, and its operators work diligently to expand it further within those borders. However, due to their inherent scalability, the potential for rapid international expansion looms large. Consequently, there exists a certain peril – namely, the prospect of international giants entering the German market with ease, rapidly gaining dominance, and then dictating the ecosystem’s rules within. And if the ecosystem is really big, and becomes very established, and there aren’t many alternatives, then of course that creates the risk for other participants that they too will no longer have any real alternative.

                How can ecosystems be regulated?

                The risk of abuse of power is relatively difficult to counter. After all, companies typically build digital ecosystems within the framework of applicable laws, progressively achieving remarkable success. Nevertheless, the issue of power concentration persists, prompting efforts, particularly at the European level, to establish a regulatory framework that curbs excessive centralization of power.

                The other risk is more at the level of market dominance, which can be addressed by trying to encourage the emergence of more digital ecosystems in Germany, and thus creating a natural counterweight to the international players. One additional aspect to note is that especially if the state also acts to provide support, it can have an influence on both the regulatory conditions and the values that are embodied in a digital ecosystem of this kind.

                Are all digital ecosystems focused on making profits?

                These entities do not necessarily have to prioritize profit above all else.  We’re all familiar with examples like Wikipedia, which enjoys widespread usage, or Better Place, a donation platform that sustains itself through contributions. Another avenue to explore is seeking suitable sponsors, or even having the public sector assume a sponsorship role. In this manner, a digital ecosystem can be conceived and operated.

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                Dr. Matthias Naab, 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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                  Without context, everything is nothing

                  Dr. Matthias Naab
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                  Patients seeking medical assistance are usually required to answer several questions about their medical history. Physicians ask these questions to narrow the scope of possible diagnoses. This process, referred to as anamnesis, is an integral part of any medical diagnosis, and the contextual information it contains helps treating physicians or clinicians determine an appropriate treatment as a next step. Contextual information thus creates benefits for various areas of our lives. This idea also forms the guiding principle of the concept for a national health platform presented here.

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

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

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

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

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

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

                  Context is the key to real patient benefits

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

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

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

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

                  How contextual information leads to specific patient benefits

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

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

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

                  Pathway Model Creators

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

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

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

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

                  What is meant by “context,” exactly?

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

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

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

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

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

                  Contextual information in trusted hands

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

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

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

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

                  Context matters

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

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

                  Authors

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

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                    Understanding information transfer as a process

                    Dr. Sebastian Schmidt-Kaehler
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                    Dr. Inga Münch
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                    Many health information providers have good intentions. They strive to have a positive impact on the individuals health behaviour, assisting them in managing illnesses and making crucial treatment choices. However, in today’s digital age, a significant portion of this well-intentioned information fails reach its intended audience, who find themselves inundated in the ever-growing flood of information in the ongoing struggle for their attention. Setting up context-sensitive information pathways could thus offer valuable support and mitigate the losses resulting from scattered information.

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

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

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

                    Ernst von Glasersfeld (1987)

                    Selective information processing

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

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

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

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

                    Between the ideal and the reality

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

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

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

                    Michael Scholz (WHO) 2003

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

                    Bibliography

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

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

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

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

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

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

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

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

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

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

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

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

                    Authors

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

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

                    Recommendations

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

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

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                    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.