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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.

    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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      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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        Health literacy and infodemics

        Dr. Sebastian Schmidt-Kaehler
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        Prof. Dr. Doris Schaeffer
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        Making healthy decisions requires access to accurate information. Health literacy involves a range of skills that enable us to effectively navigate this information in our daily lives. In an era where information is abundant, and digital platforms offer seemingly unlimited access to knowledge, many people find it challenging to sift through the overwhelming volume of information they are confronted with. When coupled with the rapid spread of false or misleading information online, this creates a perilous situation that is already posing significant challenges to our healthcare systems.

        The concept of health literacy refers to a broad set of skills that includes everything from being able to locate relevant information to understanding, evaluating and applying new knowledge in practical situations. It extends beyond the ability to simply understand health-related terms and concepts; it encompasses problem-solving abilities, communication skills and proficiency in using information technologies. It includes being able to adeptly manage personal data and to evaluate and categorize information from digital sources while also knowing how to identify and counter disinformation.

        Health literacy “… entails people’s knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgments and take decisions in everyday life concerning healthcare.”

        Kristine Sørensen (2012)

        Studies like the European Health Literacy Population Survey (HLS19), conducted in 2021 across 17 European countries, offer insights into the state of health literacy in modern populations. This survey shows that nearly half of the respondents reported experiencing significant difficulties in handling health information.  According to the survey’s respondents, assessing the credibility and quality of information prove to be particularly challenging.  Furthermore, approximately 40% of respondents across all surveyed countries struggled to use information provided through the media in making decisions about disease prevention. In Germany, where this figure is nearly 61%, we also see a lower level of health literacy: More than half of the German population – 58.8% – shows a low level of health literacy.

        Serious consequences

        Difficulties in managing health information affect not only individual health, they also have far-reaching consequences for the healthcare system as a whole. Low health literacy is often associated with unhealthy behaviors and a significantly increased utilization of healthcare services, particularly hospitalization, emergency care and physician visits. Individuals with low health literacy struggle to comprehend medication instructions, accurately assess information about illnesses or conditions, make informed choices about treatment options, and efficiently navigate the healthcare system. They  are less likely to engage in preventive measures and experience higher illness and premature morbidity rates.

        From an infodemic to an info-apocalypse

        While digital technologies can serve to facilitate improved information management, the empirical evidence regarding health literacy takes on new significance in the era of digital transformation. Information overload in the digital age has itself become a health risk, as the proliferation of misleading and contradictory information leads to growing uncertainty. While online, people are encountering bots and convincingly deceptive video manipulations that blur the line between fiction and reality. In this context, technology researcher and IT consultant Aviv Ovadya paints a bleak picture of an “info-apocalypse,” wherein modern technologies are utterly destroying the foundation of truth and trust.

        The echo chambers of social networks have already given rise to the emergence of insular communities where false and misleading information can rapidly go viral. The World Health Organization (WHO) has coined the term “infodemic” to describe this phenomenon, which not only encompasses the rapid spread of misinformation but also underscores the health risks associated with disinformation.

        “Digital health is undeniably the present and future of our healthcare systems. We must therefore ensure that there are no winners or losers, but rather that everyone benefits and no one is left behind.”

        Dr. Hans Henry P. Kluge, WHO Regional Director for Europe (2023)

        A cross-national study conducted by the WHO for the European region in 2023 reveals that, despite many countries making significant strides in developing technical infrastructures, only half of them have implemented strategies to enhance digital health literacy. This situation heightens the risk of unequal health opportunities driven by a deepening digital divide in society.

        Building resilience against disinformation

        High levels of health literacy empower individuals to not only recognize but also properly contextualize false or misleading information. Health literacy can thus be a critical cornerstone in fortifying resilience and resistance against disinformation, ultimately mitigating health risks within the population. It is a key factor in achieving an effective digital transformation of healthcare. We must therefore act now to carry out strategies that promote health literacy. This involves doing more than strengthening individuals’ skills and improving the resources available to the public. To improve the situation for individuals with low health literacy, we need a user-friendly healthcare system that reduces demands and facilitates effective information management.

        This means we need to create user-friendly digital applications and information resources that deliver genuine benefits. These resources should not only cater to individual learning contexts, needs and preferences but also offer effective quality assurance mechanisms. Ultimately, we need to establish digital platforms that patients can safely navigate, and which ensure robust data privacy and the highest standard of data security. Patients should be able to access curated information on these platforms that empowers them to become active participants in their treatment and make informed decisions about their health.

        Bibliography

        Kickbusch I, Pelikan J M, Apfel F, Tsouros A D (‎2013)‎. Health literacy: the solid facts. World Health Organization. Regional Office for Europe. https://apps.who.int/iris/handle/10665/326432

        Rudd R (2006). The Health Literacy Environment of Hospitals and Health Centers. National Center For the Study of Adult Learning and Literacy. www.hsph.harvard.edu/healthliteracy

        Schaeffer D, Vogt D, Quenzel G, Berens E M, Messer M, Hurrelmann K (2017). Health Literacy in Deutschland. In: D. Schaeffer und J M Pelikan (Hrsg.), Health Literacy: Forschungsstand und Perspektiven. Bern.

        Schaeffer D, Berens E-M, Gille S, Griese L, Klinger J, de Sombre S, Vogt D, Hurrelmann K (2021). Gesundheitskompetenz der Bevölkerung in Deutschland vor und während der Corona Pandemie. Ergebnisse des HLS-GER 2. Bielefeld. Interdisziplinäres Zentrum für Gesundheitskompetenzforschung (IZGK), Universität Bielefeld.

        Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, Brand H, European Consortium Health Literacy Project (2012). Health literacy and public health: a systematic review and integration of definitions and models. MC Public Health 12, 80. DOI: 10.1186/1471-2458-12-80

        The HLS19 Consortium of the WHO Action Network M-POHL (2021). International Report on the Methodology, Results, and Recommendations of the European Health Literacy Population Survey 2019-2021 (HLS19) of M-POHL. Austrian National Public Health Institute. Vienna.

        Warzel C (2018). Believable: The Terrifying Future of Fake News. https://www.buzzfeednews.com/article/charliewarzel/the-terrifying-future-of-fake-news

        WHO – World Health Organization (2020). Infodemic management: a key component of the COVID-19 global response. Weekly Epidemiological Record 95(16), 145–148.

        WHO – World Health Organization (2023). The ongoing journey to commitment and transformation: digital health in the WHO European Region. WHO Regional Office for Europe. Copenhagen.

        Authors

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

        Prof. Dr. Doris Schaeffer is Senior Professor at the Faculty of Health Sciences at Bielefeld University, Co-Director of the Center for Interdisciplinary Health Literacy Research (IZGK) and Senior Fellow at the Hertie School of Governance. She is the initiator and co-editor of the National Action Plan on Health Literacy in Germany and a member of the EHII Action Network on Measuring Population and Organizational Health Literacy (M-POHL), founded in 2018. From 2010 to 2014, Schaeffer was a member of the German Federal Ministry of Health’s Council of Experts on Health Care Developments.

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          Trusted Health Ecosystems: Our project approach

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

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

          New power dynamics

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

          Platform strategies for national healthcare systems

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

          Promoting health literacy

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

          Inspiration

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

          International context

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

          Real-time project results

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

          Authors

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

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

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          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.