SPOTLIGHT HEALTHCARE

Data, analysis, perspectives | No. 3, 2019 Fake Health Information Identifying and curbing it

●● Playing with people’s hopes: Fake health information can cause great damage and lead to a long-lasting loss of trust in medicine

●● A variety of causes: Bad content is spread out of conviction or because of commercial interests, but also results from carelessness

●● Recognizing the damage potential: Dangerous information is hard to identify. New criteria help evaluate the potential for damage

●● Google search results test: Two teams of experts reviewed 46 websites in a non-representative field test. They unanimously agreed that four websites had high damage potential and eight websites no damage potential

●● Insufficient patient protection: Responsibilities are unclear, supervisory duties are too lax in their implementation, and penalties are rarely issued 2 Spotlight Healthcare – Fake Health Information

Authors he internet supports the public in many questions relating to health and disease: False health information is often TWhat’s the best treatment for my child? linked“ with product advertising and is, What therapy options do I have for a herniated at times, aimed at individuals with disc? What can I do about high blood pressure? serious illnesses. It is unacceptable Today, we find answers to health questions in the internet as a matter of course, and it is often that profits are made in this way from the first step: According to Bertelsmann Stiftung the suffering of people and putting studies on the use and dissemination of health their health at risk. Claudia Haschke information on the internet, a good 58 percent Kai Helge Vogel, Leader of the Health Care Team at Project Manager of patients ask “Dr. Google” before visiting a ” claudia.haschke@ the Federation of German Consumer Organisations physician, and 62 percent after. bertelsmann-stiftung.de (Verbraucherzentrale Bundesverband) Almost all patients start their research in the internet using a search engine. Some 52 percent of patients who look for answers in the internet are satisfied with those that they find. The source Playing with people’s hopes of the information is rarely questioned – accord- ing to the results of last year’s study, the infor- Fake health information is not a new phenom- mation is often blindly trusted. A total of 65 per- enon. It can be found in traditional media, in cent of internet users say that it is difficult for books, or passed on by word of mouth. Problems Marion Grote Westrick them to determine which information is trust- arise when homeopathy is presented uncritically Senior Project Manager worthy. in schoolbooks, when television programs report marion.grotewestrick@ Misinformation, however, can have significant one-sidedly on the risks of vaccination, or when bertelsmann-stiftung.de adverse health effects and financial consequences physicians advise their patients to take pointless if it is believed and acted on. These consequences treatments. However, misinformation spreads more have an impact not only on the individual, but quickly, cheaply, and also sometimes more suc- also on society, such as when vaccination rates cessfully through digital media. It is difficult to fall or treatment costs rise because of late inter- correct, and often remains online for a long time. vention. Good information online and in social media Today, anyone can swiftly publish text, pictures can provide valuable support. However, not all and videos in the internet and reach a large audi- search results that appear on the first page of a Nicola Kuhrt ence. Individuals disseminating fake health infor- search engine lead to reliable health information. MedWatch mation in the internet or social media are still They contain unfounded statements like “Cure [email protected] rarely held to account. cancer in a few days” or “Diet of light – life with- In a joint project, the Bertelsmann Stiftung out food is possible!” – especially when emotion- and MedWatch, an online magazine for evidence- ally charged search terms are used. based medical journalism, have analyzed how Bad health information can have consequences fake health information in the internet can be that are harmful and potentially even life-threat- identified and dealt with. In expert workshops, ening, as well as major financial repercussions, criteria for more precise assessment were devel- such as when a breast cancer patient refrains oped, and strategies were devised that can help from chemotherapy and instead pays a supposed Hinnerk Feldwisch-Drentrup combat fake health information. miracle healer a great deal of money for ineffec- MedWatch tive therapies. [email protected] Spotlight Healthcare – Fake Health Information 3

Profit-seeking, ideology or carelessness as drivers of dissemination Definition When bad health information Bad health information is not always motivated becomes dangerous by ideology or fraudulent intent. Some websites of publishing houses, hospitals, health insurance funds, and public institutions also have content “Bad” health information is incorrect, one-sided, problems. There can be a number of reasons why abridged or subjective. Health information is poor health information is published: profit-seek- “dangerous” when it is likely to trigger beha­ ing, ideology, or carelessness. vior that causes significant physical, psycholog­ Bad health information is also spread by ical or financial harm – for the individual or hospitals, physicians, manufacturers of medical society – and / or results in a loss of trust in evi- technology, and pharmaceutical companies that dence-based medicine. (Bertelsmann Stiftung, directly profit from studies, therapies, and prod- MedWatch and the team of experts) ucts, or from the sale of recommended books. Motivated by economic interests, the media also sometimes rely on questionable content to get attention, such as “Pharmaceutical industry clicks or advertising revenue. shocked – study proves: unvaccinated children get sick significantly less often.”

Freedom of expression is Fluid boundaries between “bad” and indispensable“ for a democratic “dangerous” society. However, it can only be preserved if it does not harm other The boundaries between bad and dangerous infor- mation are fluid. Together with MedWatch and people. As such, the commitment an interdisciplinary group of experts (see box on to combating dangerous health page 7), the Bertelsmann Stiftung has developed information is also a commitment criteria to assess health information. By clearly delineating between “not quite so good” and to a free society. "really bad," these criteria can prove helpful in Prof. Dr. Alexander Roßnagel, ” evaluating the potential damage posed by prob- Director of the Research Center for Information lematic information. System Design (Wissenschaftliches Zentrum für The level of risk associated with this informa- Informationstechnik-Gestaltung) at the University tion depends on whether and to what degree it of Kassel can contribute to physical, psychological or finan- cial harm – for the users themselves or for third If bad health information is written out of con­ parties. Systemic effects, such as a loss of trust in viction or for ideological reasons, this can result scientific, evidence-based medicine or in the pub- in views being expressed in a biased manner in lic healthcare sector, are also taken into account. order to – supposedly – help other affected indi- viduals. In open platforms or in closed forums on Criteria help assess the damage potential Facebook, people often share opinions only with likeminded individuals – this reinforces dangerous The criteria developed are based, inter alia, on judgments, and the information can reach large version 2.0 of the 2016 position paper “Gute target groups for years to come. Praxis Gesundheitsinformation” (Good Practice In addition, there are platforms that provide Health Information) by the German Network for bad information, not intentionally or because of Evidence-Based Medicine (Deutsches Netzwerk their convictions, but rather because of a lack of Evidenz­-basierte Medizin). In order to assess the knowledge or time, or simply due to sloppiness. damage potential of information, 16 criteria were Complicating matters further is the fact, demon- defined (see Figure 1). Criteria 1 to 5 relate to the strated in studies, that misinformation spreads correctness of content, while criteria 6 to 12 relate faster on platforms like Twitter than accurate to transparency. Criteria 13 to 16 are relevant information. On Facebook as well, targeted mis­ for assessing the impact of the information; information on health attracts a great deal of they measure the reach of the information and 4 Spotlight Healthcare – Fake Health Information Criteria for bad health information

Correctness yes no 8. Objective of the information yes no 1. Benefits a) The purpose of the information and / or any conflicts a) The benefits are exaggerated. of interest of the information are not transparent. ______

b) The benefits are understated or denied. b) The information is probably provided for illicit ______purposes.

c) There is no reference to benefits. 9. Financing behind the information ______There are no references to how the information is financed. ______2. Risks and side effects a) Risks and side effects are exaggerated. 10. Links ______The provider links to websites that contain bad

and / or dangerous health information. b) Risks and side effects are understated or denied. ______11. Date of text creation or update c) There is no reference to risks and side effects. The date when the text was created or last updated is ______not mentioned. ______3. Correlation and causation 12. Legal notice Correlation is incorrectly conflated with a) Indication of a deliberate attempt to mislead: the legal notice causation. ______has been outsourced to service providers located abroad. ______4. Treatment options There are no references to other treatment options b) No identifiable legal person is listed. ______or to non-intervention. ______c) There is no legal notice. ______

5. Content a) The content raises false hopes. Impact ______13. Reputation of the originator The originator presumably benefits from b) The content fuels fears. a high level of public trust. ______14. Reach c) The content appeals to patients in a misleading manner. ______The information has a broad reach. ______d) The content contains inappropriate requests to take or refrain from taking a particular course of action. 15. Suggestion that the information is news ______a) The health information is presented as news. ______

Transparency b) The health information references current news. ______6. Medical advice a) There is no indication that the patient should 16. Manner of presentation seek professional medical advice for specific questions Because of its manner of presentation, the information and complaints. is perceived as highly credible by its target group. ______

b) Patients are recommended not to seek medical advice or a second opinion. Damage potential ______(individual and collective) none / low medium high 7. Referencing of sources Damage to health ______a) The sources referenced are misleading Financial damage ______(e. g., do not relate to the topic). ______Systemic damage ______

b) The sources referenced are insufficient (sources General assessment: What is the overall contradicting the message of the information are damage potential? ______not listed) or do not correctly reflect the latest science. ______

c) No sources are referenced. ______

______

Figure 1 Spotlight Healthcare – Fake Health Information 5

how trustworthy it probably seems to users. The overall assessment of the damage potential Field test: methodological approach (none / low / medium / high) of a webpage or piece of information is ultimately determined by the The team from MedWatch and two experts from the German company degree to which the 16 criteria apply. The premise Dr. Next independently evaluated a total of 46 websites: these were the here is that health information with high damage Google search results for searches for “cancer chemotherapy” (“Krebs Chemo”), potential can harm one or even several individuals “infant vaccination” (“Impfen Kleinkind”), “irritable bowel syndrome therapy” in terms of their health, their finances, or their (“Reizdarm Therapie”) and “total knee replacements” (“Knie TEP”). Studies trust in medicine (see the definition in box on show that almost everyone looking for information online only clicks page 3). within the first ten Google search results. As such, the first ten search results (excluding paid advertisements) were analyzed, as were the first Field test: top Google search results range three search results in Google’s “People also ask” box. The search terms used from exemplary to dangerous were deliberately neutral and not emotionally charged in order to prevent the information from being one-sided, as the choice of search terms has Using the set of criteria, two teams independently a significant impact on the search results. In fact, one’s choice in search evaluated the top search results from four neutral terms significantly influences the suggested hits received. For example, Google searches (see box on the right). First of the search for “treat cancer” provides completely different search results all, the test showed that the set of criteria help from “cure cancer.” All field test findings are available at: facilitate a systematic assessment of websites for www.patient-mit-wirkung.de/feldversuch (German language only) their damage potential. In some cases, the teams of experts gave different answers as to whether individual criteria were met or not. The assessment not help users make an informed decision while depends to some degree on the point of view or taking into account all treatment alternatives. the question examined (i. e., on the subjective assessment of the expert), and should therefore Responsibilities for supervision are often be justified in detail and made transparent for unclear each criterion. As expected, the websites rated very differ- Fake health information is rarely penalized. The ently. In this non-representative field test, the multitude of authorities and laws make it unclear teams of experts found no damage potential who is responsible for, at the least, random in eight of 46 websites. The experts rated the checks. In addition, supervisory duties are too lax damage potential of four websites as high: with in their implementation. The deficits are inherent searches relating to cancer chemotherapy, infant in the system: there are insufficient controls, no vaccination, and irritable bowel syndrome therapy. systematic audits, and thus barely any penalties. There were two websites in the search relating This starts at the federal level. Responsibility to cancer chemotherapy that contained highly for consumer health protection lies with the Ger- problematic information that could be life-threat- man Federal Ministry of Health (Bundesgesund- ening to patients if acted on. Four of the 12 web- heitsministerium), the German Federal Ministry sites examined for the same search were unobjec­ of Justice and Consumer Protection (Bundesmi­ tionable. nisterium der Justiz und für Verbraucherschutz), Some of the websites for irritable bowel syn- as well as the German Federal Ministry for Food drome therapy also contained extremely question- and Agriculture (Bundesministerium für Ernährung able information, which, however, posed barely und Landwirtschaft). There are also subordinate any direct danger to patients. Nevertheless, the authorities, such as the German Federal Centre false claims undermine trust in science-based for Health Education (Bundeszentrale für gesund- medicine. heitliche Aufklärung, BZgA), the German Federal Websites with medium damage potential came Institute for Drugs and Medical Devices (Bundes- mostly from healthcare providers, especially with institut für Arzneimittel und Medizinprodukte, search results for total knee replacements. Here, BfArM), and the Robert Koch Institute (Robert physicians, hospitals and private entrepreneurs Koch-Institut, RKI) from the German Federal advertise a service or therapy. Criticisms included Ministry of Health, as well as the German Federal missing references to sources and incomprehen­ Institute for Risk Assessment (Bundesinstitut für sible jargon, as well as a lack of neutrality and Risikobewertung, BfR), and the German Federal objectivity, and a general presentation that does Office of Consumer Protection and Food Safety 6 Spotlight Healthcare – Fake Health Information

(Bundesamt für Verbraucherschutz und Lebens- petition (Gesetz gegen den unlauteren Wettbewerb, mittelsicherheit, BVL) from the German Federal UWG): in accordance with the Annex to Section Ministry for Food and Agriculture. However, gov- 3(3)(18), illegal commercial practices within the ernment supervisory tasks are largely carried out meaning of Section 3(3) include “falsely claiming at the state level. that goods or services are able to cure illnesses, Several laws pertain to the health information dysfunction, or malformations.” market. In addition to the Medicinal Products Act Regulations of varying relevance can be (Arzneimittelgesetz, AMG), the Medical Devices Act found in many places: in the professional codes (Medizinproduktegesetz, MPG) and the Health Ser- of physicians and pharmacists, as well as in the vices and Products Advertising Act (Heilmittel­ werbe-­ guidelines of internet companies like Facebook, ­gesetz, HWG), there is the Act against Unfair Com- Twitter and YouTube. Despite or even because of the many responsibilities, authorities and rules, breaches of laws or the guidelines of private organizations are not systematically prosecuted. Three questions for Jutta Hübner There is no market watchdog

Controls and sanctions are still only implemented Professor of Integrative in isolated cases. The investigative authorities Oncology at Jena University or consumer protection associations that can issue Hospital warnings against misleading advertising will only take action on breaches that are reported or in exceptional cases. As far as is known, internet Why are people falling for the claims made by supposed miracle healers? platforms like Facebook do not take action against There are three main reasons why people fall for the claims made by supposed problematic health information unless it is reported miracles healers, and they often occur in combination with each other: by users. The therapies for severe and / or chronic conditions are often very complex Although there are consumer protection and not easy for the layperson to understand. There is often a lack of good organizations and non-governmental organiza- explanations, patience and time. People with severe conditions are looking to tions (NGOs) in the environmental, food, financial, be healed; promises of healing often offer them a lifeline or a straw to clutch at. and energy sectors that monitor the market and If this better corresponds with the layperson’s understanding of how the publicize abuses, there are, by and large, still condition originated than our ultra-modern therapies, then it will be more no such market watchdogs in the health sector. convincing. There is barely any active monitoring of health If the person advocating the treatment can also communicate with empathy information in the internet, if at all. and in such a way that the layperson understands, then bad decisions can The websites of physicians or pharmacists are easily be made. also rarely checked or penalized for breaches.

How do you (re)gain the trust of patients pursuing dangerous promises Lack of cooperation between responsible of healing? authorities With honesty and respect – no patients want to harm themselves, and if they understand why we advise them against something and that we are being Another major problem is the lack of cross-border honest with them, then this is likely to succeed. cooperation between responsible authorities in different German federal states. What would have to happen to ensure that patients are well informed, Only a few German federal states, such as and can take a more proactive, participatory approach to their situation? Bavaria and Hesse, have special public prosecutor’s The first step involves a major societal undertaking: we need to strengthen offices for the proper enforcement of law in the public health literacy and we need to improve media and (digital) information healthcare sector. In practice, they focus almost (eHealth) literacy – and we need to start early with schools and also make exclusively on corruption and fraud, and not on it part of adult or continuing education programs. Physicians need more time, breaches of the Medicinal Products Act or the as well as good information and information materials in order to inform Health Services and Products Advertising Act. patients – and patients need a clear signal from us that their active parti- State authorities, health departments, and pro­ cipation is desired and necessary. fessional chambers could carry out education activities and also intervene with controls in the internet, but do not have the personnel or exper- Spotlight Healthcare – Fake Health Information 7

Good health information needs The team of experts “to be much easier to find on the Together with MedWatch and the Bertelsmann internet than bad health information. Stiftung, this interdisciplinary team of experts Google won’t do this, so a state- has developed the criteria for assessing bad and organized but politically independent dangerous health information: solution is needed. • Dr. Martin Becker Dr. Klaus Koch, Head of the Department” of Health Data scientist at Stanford University, Information at the Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit previously at the DMIR Research Group, im Gesundheitswesen, IQWiG) University of Würzburg • Prof. Dr. Cornelia Betsch Professor of Health Communication, tise to do so, and the same applies to the police University of Erfurt and customs. Patient representatives at the • Guido Bockamp federal level and in four German federal states Lawyer (Bavaria, Berlin, Lower Saxony, and North Rhine- • Prof. Dr. Jutta Hübner Westphalia) are not equipped to actively search Professor of Integrative Oncology, for websites or internet forums with potentially Jena University Hospital problematic content. Rather, they take action only • Dr. Dr. Saskia Jünger in response to reports or complaints. Health scientist at CERES, University of Cologne Search engines facilitate the spread of • Dr. Klaus Koch bad information Editor-in-Chief of gesundheitsinformation.de, IQWiG Search engines like Google play a key role in • Dr. Claudia Lampert the initial selection of health information. In the Senior Researcher at the Leibnitz Institute search results, trustworthy websites are placed on Media Research, Hans Bredow Institute, an equal footing with questionable or fraudulent Hamburg ones. It is difficult or even impossible for the lay- • Juliane Leopold person to distinguish between them. In addition, Our analysis “Schlechte Head of tagesschau.de, media journalist if they enter emotionally charged search terms like und gefährliche Gesund- • Lena Isabell Löber heitsinformationen – wie “cure,” “risks,” or “danger,” they are more likely Legal scholar, Institute of Economic Law, sie erkannt und Patienten to encounter websites with dubious content. University of Kassel besser geschützt werden The British daily “The Times” recently können” (Bad and dangerous • Stefan Palmowski reported on such a case. It involved companies health information – how to Head of the Interprofessionelles Gesund- identify it and better protect that advertise diets against cancer. Although this heitszentrum at the Hochschule für Gesund- patients), as well as our runs counter to the current scientific consensus, it heit, Bochum; previously Project Manager Spotlight Healthcare on didn’t stop Google from earning high commissions health information can be at the Bertelsmann Stiftung by selling these companies’ diet apps. Google downloaded free of charge at • Prof. Dr. Constanze Rossmann www.patient-mit-wirkung.de. says that it has now somewhat adjusted its search Professor of Communication, University of algorithm worldwide so that websites advertising Erfurt completely unfounded claims no longer end up in • Prof. Dr. Alexander Roßnagel, the top ten search results so often. A small suc- Director of the Research Center for Informa- cess, but by no means enough. tion System Design at the University of Kassel • Kai Helge Vogel, Leader of the Health Care Team at the Federa- tion of German Consumer Organisations • Dr. Christian Weymayr Medical journalist, Project Manager of IGeL-Monitor Spotlight Healthcare – Fake Health Information 8

Recommended actions

Improve consumer protection in the health market

Dangerous health information and misinformation have to be identified and stopped. The Bertelsmann Stiftung, MedWatch, and the interdisci- plinary team of experts recommend the following measures to improve consumer protection in the health market.

Improve supervision and implement penalties

› A market watchdog for health should be set up, for example, in a consumer protection organization. It should identify fake health information available online and, where appropriate, take legal action SPOTLIGHT HEALTH is an initiative of the against the providers of this information. In addition, those competi- “Improving Healthcare – Informing Patients” tion and consumer associations entitled to bring legal action should program at the Bertelsmann Stiftung. Published take action more frequently against the authors of fake information. several times a year, SPOTLIGHT HEALTHCARE › Existing governmental supervisory structures in ministries, addresses topical issues in healthcare. The authorities, and departments at the federal, state, and municipal Bertelsmann Stiftung is committed to promoting levels have to act in accordance with laws on competition, consumer a healthcare system relevant to public needs. protection, health services and products advertising, medical devices, Through its projects, the Stiftung aims to ensure and medicinal products, and take action against fake information the provision of needs-based and sustainable, disseminated by companies, homeopathic practitioners, hospitals, high-quality healthcare in which patients are and health insurance funds. empowered by access to readily understandable › In their capacity as professional supervisory bodies, chambers of information. physicians and pharmacists should conduct unannounced spot checks This issue of SPOTLIGHT HEALTHCARE is a on the websites of service providers, and consistently prevent the product of the “Patients with Impact” project. spread of misleading and dangerous information. › The German Press Council (Deutscher Presserat) and the German Further information at Advertising Standards Council (Deutscher Werberat) should tighten www.bertelsmann-stiftung.de/en/our-projects/ their regulations and, in the event of infringement, issue more patients-with-impact (in English) prominent warnings to the authors of fake health information. www.bertelsmann-stiftung.de (in German and English)

Facilitate access to good information Legal notice Photos: © Sandra Birkner, › Search engines, social media, and platform operators should adjust Publisher: Kai Uwe Oesterhelweg, their algorithms so that the providers of evidence-based information Bertelsmann Stiftung twinsterphoto - are more visible and ranked higher in search results. Carl-Bertelsmann- stock.adobe.com, › Physician and hospital information systems should contain compre- Straße 256 UKJ/Schroll 33311 Gütersloh hensible, evidence-based health information that physicians can www.bertelsmann- Translation: Neuwasser print out and distribute. stiftung.de Language Services › In future, comprehensible, evidence-based health information Editing: Burkard Rexin should be systematically integrated into electronic health records Responsible for content: Layout: Dietlind Ehlers Uwe Schwenk Printed by: Druckhaus Rihn and tailored to patients. Program Director › Patient representatives and self-help organizations should support “Improving Healthcare – ISSN (Print): 2364-4788 the public in distinguishing good health information from Informing Patients” ISSN (Online): 2364-5970 bad or even dangerous health information. Contact: Publication: Sonja Lütke-Bornefeld July 2019 spotlight-gesundheit@ bertelsmann-stiftung.de Tel: +49 5241 81-81564