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Category: Disinformation and Conspiracy Myths

In matters concerning health, disinformation can cause significant harm and even put lives at risk. The neologism “infodemia” illustrates how false or misleading information can spread rapidly and have negative effects on public health. The ability to critically evaluate health information is therefore more important than ever. However, for many people, questioning medical information, verifying sources, and applying newfound knowledge can be challenging.

Public Health – Possible impacts of disinformation

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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.

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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.

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    Creating resilience against desinformation

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    Intro:

    We need to be much more critical about what we read and hear in the news and on social media.

     

    What is health literacy?

    Health literacy is a rather new term in the health field. It entails the knowledge and motivation and competencies to find and understand and judge and use information to take decisions in everyday life. So when we are ill, when we are talking about risk factors like tobacco or smoking, when we are trying to stay healthy. But it’s also about how to navigate the healthcare system.

     

    Why is health literacy so important?

    Health literacy is important because those that have the knowledge and motivation and competencies to take care of themselves, they also do well, live better lives, use healthcare systems less. And when we have the skills with regard to health literacy, we are also empowered and we are able to trust ourselves when we deal with information and distinguishing whether this is now true or whether it’s fake news. So in the opposite, if you’re less skilled, it might be difficult and too complex to manage your health and navigate and find your way in the healthcare system. And that can have a detrimental impact. You go often to the hospital, you’re not joining screening systems, you may not know how to eat well.

     

    What does research say about health literacy?

    We know from European health literacy surveys that on average one in two face difficulties in terms of finding and understanding and using information to take action. It means that it’s not only a small proportion of people that are having difficulties, it’s actually a public health challenge that we need to tackle.

     

    Why do so many people struggle with health information?

    During the pandemic we saw how difficult it was for people to deal with health information. We need to be much more critical about what we read and hear in the news and on social media. We know that we are also faced with myths, conspiracies and people need to be able to understand what is fake news. However, we are also very challenged because sometimes fake news comes also from people we actually trust. And this is a challenging time when health is dealt with all over in the news and in social media.

     

    How can we tackle this problem?

    We can teach health literacy and digital health literacy in schools. We can ask journalists to have a more prominent role in how health is being presented in news. We can ask leadership in companies, in public and private sectors to deal with health literacy at work, because health literacy is relevant for all of us. And we need to make sure that we have access to credible information and timely information and relevant information. And a way to do that can be to establish a health data platform. So a digital health platform has so many opportunities to actually bring health to people.

    Content

    Those who want to inform themselves about health topics often feel lost in the jungle of information. According to surveys, many people do not have the necessary health literacy to distinguish fake news from trustworthy information. In this video, Dr. Kristine Sørensen, President of the International Health Literacy Association, explains why health literacy is important and how a national health platform can contribute to improving health literacy.

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    Health literacy and infodemics

    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.

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      Disinformation in the healthcare sector: Brave new communication world

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      Intro

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

      How do people stay well informed in the digital age?

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

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

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

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

      Can platforms shield against disinformation through quality mechanisms?

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

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

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

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

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

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

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

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      Expert

      Alexander Sängerlaub is the Director and Co-founder of futur eins. He takes a holistic approach to digital public spheres and explores how the utopia of an informed society can be achieved. Previously, he helped establish the “Strengthening Digital Public Sphere” department at the Berlin think tank Stiftung Neue Verantwortung, where he led projects on disinformation (“Fake News”), fact-checking, and digital news literacy. He studied journalism, psychology, and political communication at the Freie Universität in Berlin.

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        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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        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.