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Health literacy and infodemics

Dr. Sebastian Schmidt-Kaehler
Prof. Dr. Doris Schaeffer

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
    Dr. Inga Münch

    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 InfoQ: 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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