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Category: Engagement

User engagement is essential when designing a national health platform. By systematically capturing the needs, abilities, and desires of various target groups, valuable insights can be gained. Additionally, potential users should actively participate in the development process and provide important input for the design. The younger generation, in particular, should be included in the development process, as they are the future users of a digital healthcare system.

Shaping the future of digital healthcare

Mina Luetkens
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Vera Weirauch
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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.

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    Youth Engagement – Young voices on Trusted Health Ecosystems

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    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.

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

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      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.

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      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.

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

        Content
        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.

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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.


          Digital Health – Patient engagement as a key to success

          Content
          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.