archive

Shaping the future of digital healthcare

Mina Luetkens
Vera Weirauch

Achieving a sustainable digital transformation in healthcare requires more than technical innovation – it calls for interdisciplinary thinking and meaningful user engagement. As patients navigate an expanding landscape of digital services, treatment options, and sources of health information, they gain new opportunities to play a more active role in their care. To harness this potential and strengthen patient-centered approaches, a national health platform can serve as a trusted, centralized point of access. Its success, however, hinges on involving users early and often in the design process. The future of digital healthcare requires collaboration. The following article outlines key considerations for embedding user participation into the development of a national health platform.

A shared digital vision

National legislation – including the Digital Act (DigiG), the Health Data Use Act (GNDG), and the Federal Ministry of Health’s digital strategy – is helping facilitate the digital transformation of healthcare in Germany. Milestones such as the rollout of the electronic health record (ePA), the introduction of e-prescriptions, and new frameworks for leveraging health data under the GNDG mark critical progress. At the European level, the European Health Data Space (EHDS) is also generating momentum, aiming to strengthen health data use and facilitate cross-border care.

Patients – and all who engage with the health system – are at the center of these developments. This focus is essential. As digital tools and biotechnologies evolve, users are navigating an increasingly complex health ecosystem, characterized by a growing number of treatment and communication options, information sources and stakeholders. Global tech companies are also entering the health sector with user-friendly digital platforms, amplifying both the volume of choices and the burden of individual decision-making and responsibility (BMG 2023; BMG 2024).

The Trusted Health Ecosystems platform strategy complements national and international digitalization efforts. By curating and integrating trusted sources of information and services, it aims to strengthen health literacy and empower users to make informed decisions and participate more actively in their care (see Our concept – Bertelsmann THE). At the same time, it seeks to create a digital space built on trust – ensuring data protection, privacy, and user autonomy, while fostering data solidarity to improve population health outcomes.

A key to meaningful digital transformation in healthcare: Engaging users

User engagement is essential to ensuring that a national health platform responds to real-world needs. Thoughtfully involving users from the outset helps align digital solutions with the expectations and priorities of those they are designed to serve.

When platforms are developed with a user-centered approach, they are more likely to gain trust, improve satisfaction, and see broader uptake – all of which can support better health outcomes over time (Fischer 2020; Hochmuth et al. 2020).

Numerous initiatives and participatory approaches in research and development are helping to formalize and strengthen user involvement. Regardless of the specific context, one principle holds across the board: meaningful collaboration between developers, healthcare providers, and patients is vital to success.

Participatory approaches to developing a national health platform

Effectively involving users in the development of a national health platform requires drawing on a range of participatory research and design approaches. These methods can be combined in complementary ways to strengthen user engagement and ensure that the platform reflects the needs and expectations of the people it is meant to serve.

One prominent international initiative is the International Collaboration for Participatory Health Research (ICPHR), which works to promote and advance participatory health research. Its German-speaking network, PartNet, offers a space for exchange among researchers, practitioners and members of the public, while also supporting the development and dissemination of participatory research methods.

In Germany, the Federal Ministry of Education and Research (BMBF) has developed a digitalization strategy aimed at fostering dialogue between science and society.  A central focus is on involving citizens more actively in research processes. The BMBF’s research program Innovation Through Collaboration further supports participatory approaches in innovation, funding projects that bring together diverse stakeholders to co-develop solutions to pressing societal challenges (BMBF 2023).

In the research context, patient and public involvement (PPI) plays an increasingly important role. This approach engages patients, caregivers and the wider public throughout the entire research process – from setting priorities and planning studies to conducting research and sharing results.

Participatory health research (PHR) takes this model further by treating affected individuals as equal partners in the research process. The goal is to bridge the gap between science and practice, ensuring that research findings are directly translated into improvements in care and health outcomes.

Community-based participatory research (CBPR) follows a similar ethos, emphasizing equal partnership between researchers and community members. This approach is especially valuable for addressing the needs of specific populations – such as marginalized ethnic groups or communities facing health inequities – by co-creating solutions grounded in local knowledge and lived experience.

Citizen science also provides meaningful opportunities for public participation in scientific work. In the health context, this might involve individuals contributing to research by collecting or sharing their own health data, often via smartphone apps or digital tools (NIHR; Wright et al. 2021).

In the field of design, participatory methods offer additional avenues for engagement. Human-centered design (HCD) and user-centered design (UCD) place users at the core of the development process, incorporating their needs, preferences and behaviors into the creation of digital health solutions. These iterative methods engage users throughout the design cycle.

Co-creation and co-design go a step further, inviting users to work side by side with developers as equal partners across all phases of development. This collaborative approach can yield more innovative solutions that reflect the insights and experiences of all stakeholders.

Integrating these research and design approaches can lead to a more robust, inclusive process for developing digital health interventions, systems and services. Even if a national health platform is not a traditional research endeavor, drawing on participatory methods can help ensure it is grounded in the realities of those who use it – and better equipped to serve them.

Overview: Research and design approaches

Participatory health research (PGF/PHR)

This approach views research as a collaborative process among scientists, practitioners and individuals directly affected by the issue at hand. The aim is to generate new knowledge and promote both health and equity through shared decision-making, with all participants actively and equally engaged throughout the research process.

Community-based participatory research (CBPR)

CBPR involves communities as equal partners in the research process. It seeks to integrate knowledge and action to drive social change and reduce health disparities – particularly those linked to social, economic or environmental determinants of health.

Citizen science

Citizen science enables members of the public to take an active role in research – for example, by collecting, analyzing or interpreting data. The goal is to expand public engagement in the research enterprise.

Human-centered cesign (HCD) and user-centered cesign (UCD)

These design methodologies place users’ needs, preferences, and behaviors at the forefront of the development process. The objective is to create digital health tools and services that are intuitive, relevant and easy to use.

Co-creation or co-design

In co-creation and co-design, users and developers work together as equal partners across all phases of the development process. By incorporating diverse perspectives, these approaches aim to deliver more innovative and responsive solutions.

Recommendations for engaging users in the design of a national health platform

A national health platform grounded in the Trusted Health Ecosystems vision puts patients first. This population is, by nature, highly diverse – and any inclusive approach must also account for the needs of vulnerable groups. That includes addressing barriers related to language, literacy, and digital access to avoid deepening the digital health divide. To ensure the platform reflects users’ needs, expectations and acceptance criteria, a range of engagement formats should be employed – such as surveys, interviews, focus groups, and workshops, conducted both in person and online.

Importantly, the choice of methods should itself be informed by user input, to encourage broad participation and uphold the principle of shared ownership throughout the process. Development should follow an iterative model, with users involved in regular testing and their feedback continuously informing the design.

Patient involvement should be viewed not only as an ethical obligation but as a strategic necessity – essential to building a platform that is truly responsive and widely adopted.

What follows is an outline of key steps for a participatory development process aimed at creating a sustainable and equitable national health platform (OECD 2022).

Challenges and strategic responses

Building a national digital health platform involves a host of challenges that extend well beyond technical implementation. Safeguarding data privacy and security must be paramount to earn and maintain user trust. At the same time, standards for informed consent must be upheld, and ethical considerations thoughtfully addressed. This requires close coordination among developers, legal experts, and ethicists to ensure that digital solutions meet both legal and normative standards.

Interoperability across existing systems and the integration of emerging technologies – such as artificial intelligence and big data – are critical success factors. Digital solutions must align with current infrastructures to be effective and capable of improving care delivery.

For digital tools to be widely adopted, social and digital access barriers must be actively reduced. A range of educational and support initiatives is needed to help the public – including patients – navigate and use new technologies with confidence.

The goal is to prevent the emergence of a digital health divide. Participatory processes can help ensure that the needs of diverse, and particularly vulnerable, groups are reflected in platform development. This includes addressing technical accessibility (e.g., compatibility with screen readers) and language access (e.g., plain language, multilingual interfaces) as part of a broader commitment to inclusivity. Enhancing digital literacy through targeted education and outreach can empower users to actively engage with the evolving digital health ecosystem. Achieving this will require sustained collaboration among educational institutions, healthcare providers and technology developers.

Conclusion

The digital transformation of healthcare is not just a technical challenge – it is a collective societal responsibility. Its long-term success hinges on the meaningful engagement of users. To that end, all stakeholders – policymakers, healthcare providers, developers, digital solution providers, and the research community – must take an active role in involving patients throughout the design processes. Placing the needs and preferences of users at the center of digital health initiatives is essential to building a truly patient-centered system.

Only through sustained collaboration and a shared commitment to prioritizing patients can we ensure that digital healthcare is not only efficient, but also equitable, transparent and inclusive.

Bibliography

BMG – Bundesministerium für Gesundheit (2024). Digitalisierung im Gesundheitswesen. https://www.bundesgesundheitsministerium.de/themen/digitalisierung/digitalisierung-im-gesundheitswesen.html

BMG – Bundesministerium für Gesundheit (2023). Digitalisierungsstrategie. https://www.bundesgesundheitsministerium.de/themen/digitalisierung/digitalisierungsstrategie.html

Fischer, Florian (2020). Digitale Interventionen in Prävention und Gesundheitsförderung: Welche Form der Evidenz haben wir und welche wird benötigt?. Bundesgesundheitsbl 63, 674–680. https://doi.org/10.1007/s00103-020-03143-6

Hochmuth, Alexander, Anne-Kathrin Exner & Christoph Dockweiler (2020). Implementierung und partizipative Gestaltung digitaler Gesundheitsinterventionen. Bundesgesundheitsbl 63, 145–152. https://doi.org/10.1007/s00103-019-03079-6

BMBF – Bundesministerium für Bildung und Forschung (2023). Partizipationsstrategie Forschung. https://www.bmbf.de/SharedDocs/Downloads/DE/2023/partizipationsstrategie.pdf?__blob=publicationFile&v=4

NIHR – National Institute for Health Research (o. D.). What is patient and public involvement and public engagement? School for Primary Care Research. https://www.spcr.nihr.ac.uk/PPI/what-is-patient-and-public-involvement-and-engagement

Wright, Michael, Theresa Allweiss & Nikola Schwersensky (2021). Partizipative Gesundheitsforschung. In: Bundeszentrale für gesundheitliche Aufklärung (BZgA) (Hrsg.). Leitbegriffe der Gesundheitsförderung und Prävention. Glossar zu Konzepten, Strategien und Methoden. https://doi.org/10.17623/BZGA:Q4-i085-2.0

PartNet – Netzwerk für Partizipative Gesundheitsforschung (o. D.). http://partnet-gesundheit.de/ueber-uns/organisatorischer-rahmen/

OECD (2022). OECD Guidelines for Citizen Participation Processes, OECD Public Governance Reviews, OECD Publishing, Paris, https://doi.org/10.1787/f765caf6-en

Authors

Mina Luetkens

The trained physicist has worked for many years in global roles at large pharmaceutical companies, including as a portfolio manager, internal auditor, and controller. Publicly, Mina Luetkens advocates for the position of patients and societal involvement. Her personal focus is on networking the areas of technology and system/culture. With Patients4Digital, she promotes participation in healthcare (participatory research and development) as well as Human Centered Healthcare.

Vera Weirauch

Vera Weirauch is a research assistant in the Healthcare Department at the Fraunhofer Institute for Software and Systems Engineering ISST. Since 2022, she has been bringing her expertise to various research projects on digital and data-driven healthcare of the future. As a doctoral candidate, she is researching participatory procedures in the field of Digital Health and examining the involvement of citizens in the development and evaluation processes of digital health interventions.

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.


    Youth Engagement – Young voices on Trusted Health Ecosystems

    Transcript

    We had the pleasure to ask six global youth representatives what they think about our Trusted Health Ecosystems-concept. Our interview partners from the Digital Transformations of Health Labs and the WHO Youth Council have given us valuable feedback in this video. Tomiwa Akinsanya (Nigeria), Yifan Zhou (Canada), Caroline Knop (Germany), Soe Yu Naing (Myanmar), Kristina Almazidou (Greece) and Mellany Murgor (Kenya) have their say.

    Take a look at the many different answers:

    Yifan: I like the Trusted Health Ecosystems concept because it simplifies a lot of things for me.

    Caroline: I like that the concept is really comprehensive.

    Soe Yu: It also addresses the issue of trust and transparency.

    Tomiwa: What I like most about the concept is the fact that it integrates trust into its theme.

    Yifan: I can find all the information on the platform and that’s a very simplification, that’s a big thing for me.

    Tomiwa: That is one thing that young people across the world need at the very moment. Because they expect transparency from their government. They expect transparency for their health data and they expect transparency while practicing digitally online.

    Kristina: I like the fact that it’s a win-win situation, all the data of the patient history is in one place. So it is accessible for both the patients and also the health providers.

    Mellany: What I like most about this concept is the fact that it’s going to be inclusive and it looks like it’s going to be a one-stop-shop for all information that we need in terms of health.

    Yifan: I can find all the information on the platform and that’s a very simplification, that’s a big thing for me.

    Mellany: Looking at the health platform, I think it’s important to consider integrations with other aspects over and above health that are already in digital platforms.

    Yifan: It’s important for us to access the platform that’s easy, that’s not going to add onto any additional workflows that we already have.

    Caroline: With Trusted Health Ecosystems, we’ll once have a platform which integrates all the different solutions that are already there.

    Soe Yu: If you really want to work for young people make it simple, make it relatable, and make it powerful, that we feel that we are represented in the platform.

    Tomiwa: I think that young users need to have a friendly interface when it comes to utilizing digital applications.

    Mellany: In terms of the young people over and above the tailored information, I think it would be very important to look at the transitions in terms of when the young people transition into adulthood, but also the various changes that can happen in their lives.

    Caroline: For young people, it’s really important to include preventive aspects, because a lot of young people don’t have chronic diseases at the moment.

    Kristina: And also we should not forget the marginalized groups.

    Caroline: It needs to be accessible and have features for people who have disabilities as well. It needs to be accessible in different languages and adapt to different cultural backgrounds. It’s really important to include all people in the health platform.

    Yifan: For me, I want something simple, that solves my biggest problem. And one of my biggest problems with the healthcare system is not knowing where to go, how to navigate it. So if there is a platform, that helps me navigate the system in one click or something, that would be perfect.

    Recommendations

    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.


      Youth Engagement – How can young people be involved in the design of a health platform?  

      Transcript

      Intro

      Well, I think youth input is often missing in addressing the specific needs of youth in these digital health solutions.

      What role should young people play in shaping the future of digital health?

      So young people are the experts of their own experience, right? That’s the primary area that you really need their insights on, because sometimes you have digital health solutions being created and no young person has been consulted on its development. And you can’t create a solution for someone without asking them what they’d like to see.

      So young people will help to create that vision of, one, identifying the problems, and then two, identifying what potential solutions would work for them and that they would actually utilize. And then three, allowing them to also help in the implementation.

      But I think primarily their expertise is their experience as a young person in this modern world.

      How well do digital platforms address the specific needs of young people?

      Well, I think youth input is often missing in addressing the specific needs of youth in these digital health solutions. Young people are very concerned about issues like privacy, especially around their data. And they’re also very concerned about mental health and the impacts of all tech solutions on their mental health.

      So I think right now we’re in a space where there are lots of opportunities now for young people to get more involved. And I think young people are seizing that as much as they can. But there’s always going to be room for more input and more co-creation with young people for these digital health platforms.

      How can policymakers and healthcare providers support youth participation in digital health ecosystems?

      So I would say that they can better assist young people in participating by first just listening and creating the opportunities for these kinds of conversations and discussions. And, you know, I think that the young person who is in rural Guatemala or is an indigenous person in Guatemala has a very different experience from someone who’s coming from the Caribbean or coming from Africa. And so we must have these different spaces where we look at the types of young people in all their diversities and ensuring that we are as inclusive as possible when creating these tables for young people to have a seat.

      The second point I would say here is it’s important to put resourcing behind the conversations that we’re having. So, yes, we’ll speak and it’ll be a great time, fancy event. But what are the action items that come out of it? And what are the concrete commitments that are coming from policymakers or different organizations as they’re supporting youth inclusion here?

      So it’s great to have the ideas, but we need the funding to implement it as well.

      Content

      Expert

      Danielle Mullings is a digital transformation consultant for health and education with a degree in Science and Technology. She discovered her passion for technology at Campion College, excelling in the Caribbean Advanced Proficiency Examination (CAPE) Computer Science. Danielle is an advocate for using technology to drive societal change and has worked as the Impact & Partnerships Officer for Transform Health, a global coalition aimed at universal health coverage. She has also been involved in various youth digital health initiatives and served as a UNICEF U-Report Jamaica ambassador.

      Recommendations

      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.


        Youth Engagement – Why is young people’s perspective on digital health so crucial?  

        Transcript

        Intro

        I think each individual on this planet is always going to be an expert in their own experience, and that in and of itself is very valuable.

        What is the concept of meaningful youth engagement?

        Meaningful youth engagement really consists of two things. One is listening, and the second piece is action. Now, there’s so many young people that come in their various diversities, right? And so one thing I always find interesting is that you’ll have one young person who may come from a certain place in society. Maybe they have different socioeconomic standings. Maybe it might be geographic barriers that they may be facing.

        Each person’s challenges and barriers are going to be different. So it’s very important that as we consider this concept of meaningful youth engagement, we’re really considering what are the different types of young people who are affected by this. In healthcare, that’s very broad, and we can continue to escalate that. But who are the main persons who aren’t being listened to and heard right now, and how can we take action to alleviate the issues and challenges that they’re having? Sometimes we’re invited to the table, and then nothing happens after that. So it’s important to take action on the feedback and insights given.

         What are the primary challenges young people face when trying to engage in digital health initiatives?

        So I think the first issue that young people face is just a lack of awareness of what opportunities and spaces there are to get involved in. Sometimes these aren’t adequately, you know, socialized or made aware to everyone. The second challenge that is pretty big is going to be resourcing. Because sometimes young people have, you know, lots of different ideas. We are a generation of innovators. But we don’t always have the resources to be able to actually implement it. And I think that leads into the third challenge, which is just about, you know, not always having decision makers being willing to listen to us. They might say, you’re too young, you know, you don’t have enough experience, you don’t know anything. Everyone deserves a space to be able to speak. But I think each individual on this planet is always going to be an expert in their own experience. And that in and of itself is very valuable. You need a young person in, you know, rural Guatemala to tell you what their lived experience is. Or indigenous persons from other areas of Latin America. Or someone living in the Caribbean on an island for their entire life. Like, all these experiences are vastly different. And we need those spaces and those opportunities to be able to share our own experiences.

        What advice would you give to youth organizations looking to get involved in digital health?

        So as a youth organization, the first thing you want to do is ensure that you are very representative. And, you know, you may have a handful of, representatives within your organization that go out and speak. But you want to ensure that you’ve actually spoken to the communities and the communities of people where you come from. So you want to ensure that if you’re coming from Jamaica, you’re speaking to not just those who are from Kingston like I am, but those were from more rural communities like, St. Elizabeth or Mandeville. So it’s important to have that combined perspective.

        So the second point I would give here is around the importance of digital literacy and understanding. And we have to ensure that the solutions or the world that we’re trying to advocate for doesn’t forget the world that we’re currently in right now. And so any community that you’re advocating for, you have to assess where they are today and what tangibly can happen in the next year or two years. Some communities don’t have internet access. Or if they do, some don’t understand how to use a computer adequately. And you have to look at the specific needs of the people there and what’s the next best digital health tool that can assist them.

        What are the future trends in digital health from young people’s perspective?

        I’ll speak about what young people want to see. And one is going to be a greater focus on mental health. Interestingly, young people all over the world, especially in the region of Latin America and the Caribbean, believe that this is a high interest area. And so I believe we’re going to see more digital health solutions within that space.

        The next one is going to be a focus on data privacy and how we communicate how our data is being used on these platforms. I think that that’s something young people want to see so much of. And I hope that policymakers and decision makers and different, you know, private entities will also take that into consideration.

        Content

        Expert

        Danielle Mullings is a digital transformation consultant for health and education with a degree in Science and Technology. She discovered her passion for technology at Campion College, excelling in the Caribbean Advanced Proficiency Examination (CAPE) Computer Science. Danielle is an advocate for using technology to drive societal change and has worked as the Impact & Partnerships Officer for Transform Health, a global coalition aimed at universal health coverage. She has also been involved in various youth digital health initiatives and served as a UNICEF U-Report Jamaica ambassador.

        Recommendations

        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.


          Digital Health – Patient engagement as a key to success

          Transcript

          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.

          Content

          Expert

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

          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.


            Public Health – Possible impacts of disinformation

            Transcript

            Intro

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

            How dangerous are infodemics for patients?

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

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

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

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

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

            Content

            Expert

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

            Recommendations

            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.


              Benefit model for a national health platform

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

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

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

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

              Stakeholder analysis and benefit modeling

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

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

              The benefit model

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

               

              Positioning in the platform market

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

              Access to data

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

              Professional information management

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

              One-stop shop

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

              Verified providers

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

              Focus on the essential

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

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

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

              Recommended articles

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

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

              Find out more

              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.


                Trust in digital systems

                Content

                Behind our vision of a national health platform is an overarching value: trust. Data misuse, nontransparent algorithms, increases in cyberattacks, disinformation, and the unresolved question of how the digital environment should be regulated and controlled are together creating a profound crisis of confidence that is shaking the foundations of our society in many areas of life. Yet trust in digital ecosystems is critical to ensure their successful design and long-term existence. This is especially true in the healthcare sector.

                Trust is the foundation on which all interactions and transactions within a digital ecosystem are based. People must be able to trust that their personal data is secure, that information is reliable and that their interests are being respected. But how can this trust be generated? The answer can be derived from the risks faced by users of digital platforms. For example, in addition to the risk of data misuse by platform operators, there are also the dangers of hacker attacks that target personal data, of discrimination and manipulation through nontransparent algorithmic systems, and of unfair business practices. Accordingly, a canon of factors useful in inspiring confidence has emerged. These must be taken into account when building a national health platform:

                • Compliance with data protection regulations and legal standards must be a non-negotiable aspect. Privacy protections and compliance with applicable laws are indispensable for gaining and maintaining users’ trust.
                • Digital platforms must implement robust security measures in order to offer the best possible protection against threats such as cyberattacks and data leaks. In addition, users should be given the opportunity to adjust their own security settings.
                • Information and services should meet high standards of quality and reliability. This includes the involvement of patient organizations and experts in the development and monitoring of the platform (see InfoCure: Making quality visible).
                • Each and every interaction must be fair for all users. Platform operators must ensure that their digital systems are fair, equitable and nondiscriminatory in order to gain and maintain trust over the long term.
                • Transparency is another key factor: Users must be able to understand how their data is collected, processed and used. This also applies to the use of artificial intelligence and machine learning functions.
                • Beyond the technical and legal aspects, communication also plays a key role. Clear information about privacy and security issues will help people better understand the risks and opportunities of using digital platforms, and increase their willingness to place their trust in these systems.
                • The participation of users in the development process can also play an important role in increasing trust in a national health platform. Moreover, including different target groups and perspectives in the development process promotes diversity and inclusion within the digital ecosystem itself.

                In an era of disinformation and conspiracy myths, we need trusted digital spaces where we can get reliable information from trustworthy sources, where data sovereignty is respected and where transparency is a fundamental operating principle. Trust in digital systems can emerge only through the interplay of many different key factors that should play a significant role in shaping a national health platform. All actors involved in the ecosystem need to work hand in hand to strengthen these foundations, together making the platform a trusted space.

                Recommended video

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

                 

                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.


                  What is platform power?

                  Dr. Michael Seemann

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

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

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

                  Platform power

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

                  Platform power consists of two parts:

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

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

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

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

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

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

                  The graph grab

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

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

                  The politics of platforms

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

                  The business model

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

                  Enshittification

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

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

                  The ambivalence of platforms: Usefulness is power

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

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

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

                  Bibliography

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

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

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

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

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

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

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

                  Author

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

                  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.


                    Objectives and conceptual premises

                    At the center of our vision are patients and anyone using the healthcare system. In the course of the digital transformation process and of bio-technological advancements, users will be confronted with an increasingly broad spectrum of treatment options, a growing number of entities, and new technologies. The number of decisions that need to me made increases with the complexity of the system, and alongside options for participation, personal responsibility also increases. Given the level of interaction people now have with social media and fake news, there are major challenges where individual decision making is concerned, because good decisions always require good information.

                    By selecting and bundling information and service offers, the national health platform should facilitate access to trustworthy offers. The intent is to support patients in making informed decisions and being active and co-productive with regard to treatment processes. A further aim is to improve healthcare overall by creating a digital trust space that guarantees data privacy, data security, and informational self-determination, while also promoting data solidarity in parallel. Our concept for a national health platform is based on these 10 premises:

                    01
                    Creating trust

                    Trust in digital systems and associated responsible institutions within healthcare is limited.  And not without reason, as our health-related data is particularly sensitive. Many individuals are concerned that their data could get into the wrong hands. The digital ecosystem should therefore create an uncompromising level of trust in the areas of data sovereignty, protection, and security. In addition, it is also important to use algorithmic systems in as transparent a manner as possible and to define clear responsibilities in relation to the effects of these systems.

                    A central and unique characteristic of the ecosystem outlined here is quality-based selection of information and service providers as well as targeted avoidance of misinformation. The reliability and trustworthiness of the information and services provided through the platform is part of the brand’s essence and, alongside data sovereignty, constitutes an important prerequisite for building trust.

                    02
                    Promoting health literacy

                    The core service in the new ecosystem reacts to empirical evidence on health literacy among Europe’s population. According to surveys, more than half of the population has considerable difficulty finding, understanding, evaluating, acting on, and making decisionsrelated to relevant information on their health. The national healthcare platform should effectively support users in identifying information that is relevant, quality assured, and easy to understand.

                    With the aid of data analyses, the ecosystem will be tailored to the user, generate region-based references, and anticipate situational support- and information-related user needs. The information and services provided should not only relate to medical aspects but should also meet the entire spectrum of requirements that arise when coping with illness in everyday life, families, schools, vocational-education and work life, and social and leisure situations.

                    03
                    Providing benefits

                    The success or failure of a platform is closely tied to the size of a community and its rate of growth. Consequently, barriers to participation must be removed and the greatest possible benefits must be provided for patients. This can only happen when these are a focal point of product development right from the start.

                    In parallel, where providers of information and digital services are concerned, acceptance of the digital ecosystem must be created. Therefore, the platform must generate benefits and incentives for participating actors while respecting their autonomy. The challenge with regard to the ecosystem’s design therefore lies in generating tangible added value for all sides.

                    04
                    Strengthening data solidarity

                    Through the operation of the platform, new data, data flows, and interfaces arise that serve not only to optimize in-house offers, but also to deliver important information for managing healthcare delivery. Effective use of these data can constitute a strong contribution to improving care and further developing the healthcare system toward a system that learns.

                    Such analyses require a high degree of data permeability between the care landscape, research, and systems development. The national healthcare platform is intended to open new options here and provide compliance solutions for sharing data and making data solidarity a reality.

                    05
                    Taking target groups into account

                    The platform concept focuses on the supraordinate patient target group, or on all of the people using the healthcare system. The structure of the platform should be oriented around the target state of healthcare-related participation.  Therefore, it is important to do justice to the high levels of diversity among the different target groups, and, above all, to take into account the vulnerable groups that are frequently affected by or threatened with illness.  This includes people of low socio-cultural and -economic resources, migrants, and individuals with chronic illnesses and disabilities.

                    In order to do justice to the highly differentiated needs of these groups, alongside provision of multi-lingual access to information, it must be ensured that content is sensitive to culture and diversity. In parallel, through personalized offers, opportunities should be created for adapting information and services to individual preferences.

                    06
                    Ensuring cooperative product development

                    To create and optimal user experience, product development and design should put user needs in the spotlight. This requires systematic assessment of the needs, skills, and desires of different target groups. This can be done through the use of interviews, questionnaires, focus groups, and studies. Even in the process for participatory product development, potential users can play a role in delivering important information for design. Just as important are regularly occurring user tests, based on which products can be continually optimized.

                    When involving different user groups, special importance must be given to younger generations, as young people will be the primary users of a digital healthcare system of the future; they should not only be included in the development process, but should also be given the opportunity to actively participate (meaningful youth engagement).

                    07
                    Making sure no one is left behind

                    In spite of all efforts to create a digital offer that is both as user friendly as possible and that has the lowest possible barriers to entry, an effort must be made to include individuals with minimal digital readiness and limited access to digital systems, and to counter reinforcement or even the creation of inequality (digital health divide).

                    This can only happen if the barriers between the digital and analog world are fluid: Thus, the benefits and opportunities of the national healthcare platform must be accessible through integration in personal counseling and information services, as well as through other channels, such as in the context of medical treatment; via patient guides; and through institutional services, such as the Independent Patient Counseling Service.

                    08
                    Institutionalizing sponsorship

                    Sustainable financing and institutional anchoring deliver the basis for the implementation of a digital ecosystem and the associated reorganization of the information architecture in healthcare. Therefore, the ecosystem design will be anchored in a model for a legally secure, actionable, and independent support structure. This model will identify different funding perspectives and design an institutional framework for the establishment, ongoing operation, and further development of the digital ecosystem.

                    The sponsoring institution should be approved by all participating stakeholders in the ecosystem, and it should remain committed to the interests of patients. Furthermore, it should be taken into account that government information activities are subject to special legal requirements. If necessary, it may be appropriate to have certain tasks within the ecosystem be performed by different companies or bodies and to organize the ecosystem as an umbrella organization.

                    09
                    Strengthening competition

                    In the digital ecosystem outlined here, the in-house creation and provision of information and services is not part of the platform operator’s spectrum of tasks. Rather, the platform offers information and service providers the opportunity to participate in the ecosystem. Efforts must be made to ensure that companies on the market are not excluded or put at a disadvantage. On the contrary, the declared goal should be to tap the innovative power of the European health tech economy for the platform.

                    In terms of the data strategy, the national healthcare platform is also expected to make a decisive difference from commercial providers, as it should not aim to achievea monopoly on data. On the contrary, databases and interfaces could be provided by public institutions as part of an open data strategy in order to prevent cutthroat competition.

                    10
                    Thinking internationally

                    We are developing our concept for a national healthcare platform as a prototype for the German healthcare system. Digital transformation is however not a national phenomenon, and it knows no borders. Just the opposite: It merges national healthcare systems into a global healthcare market in which new challenges arise that require international strategies for solutions and collaboration.

                    Consequently, we are coordinating our platform strategy with international partner organizations, aligning ourselves with European interoperability standards, and thinking about the international scaling of our platform strategy right from the start. In the long term, within Europe, we envision a merger of national healthcare platforms to a federated platform ecosystem.

                    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.