METAFORUM POSITION PAPERS METAFORUM CONTRIBUTIONS TO INTERNAL DEBATE. Page 2 of 6

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2 Page 2 of 6 METAFORUM POSITION PAPERS The interdisciplinary think-tank Metaforum aims to strengthen the KU Leuven's involvement in societal debate by supporting multidisciplinary working groups in which researchers from different disciplines combine their scientific expertise and discuss relevant social issues from different angles. 1. Increased Use of Psychiatric Medication (2010) 2. Biodiversity: Basic Commodity or Luxury Item? (2010) 3. Socio-economic Differences in Overweight (2010) 4. Traffic Mobility in Flanders (2011) 5. Conservation and Management of Forests for Sustainable Development: Where Science Meets Policy (2011) 6. Full Sequencing of the Human Genome (2011) 7. Secondary Education Reforms in Flanders (2012) 8. Towards a New Communality for Brussels (2012) 9. Studium Generale: Proposal for an Interdisciplinary Bachelor Course (2013) 10. Public Funding of the Art Sector: The Importance of Investing in Art Production (2013) 11. Euthanasia and Human Frailty (2013) 12. GMOs in Our Food Production: Contribution to a Nuanced Debate (2013) 13. Health and Health Care: Everyone an Expert? (2015) METAFORUM CONTRIBUTIONS TO INTERNAL DEBATE A university intent on contributing to societal debate must also accept its own responsibilities. For this reason, Metaforum also supports working groups that reflect on the KU Leuven s own identity and potential for action. 1. University, Church and Society (2010) 2. KU Leuven Climate Neutral 2030 (2013) Metaforum KU Leuven, interdisciplinary think-tank for societal debate Holland College, Damiaanplein 9 bus 5009, 3000 Leuven metaforum@kuleuven.be,

3 Page 3 of 6 CONTENTS Metaforum... 2 Executive Summary... 4 Policy Recommendations... 5 Information and Communication... 5 Organisation of Health Care... 5

4 Page 4 of 6 EXECUTIVE SUMMARY The enormous amount of scientific information presently available on health and health care cannot be detached from the principle of evidence-based medicine (EBM) that has emerged in recent decades. There is a clear and substantial gulf, however, between this scientific knowledge on health and health care on the one hand, and the general population s perceptions thereof on the other. Furthermore, care providers do not always deploy the basic insights of EBM. Sometimes, moreover, they do not account sufficiently for the personal situation of patients: their goals and desires, but also the specific knowledge patients themselves have about their own situation. The present text focuses specifically on the flow of information on health and health care from the perspective of a variety of social players: scientists, care providers, individuals looking for objective information in the media, patients in their relationship with care providers. While evolution in the direction of EBM is positive, this does not mean that EBM offers a magic answer to every question we ask about the best treatment for individual patients, or that it is able to fix unequivocally the direction general health care policy should follow. In addition, the reality of the scientific enterprise differs from the rose-coloured image it is often given. Health care providers have a difficult task: they are expected to translate abstract scientific knowledge into concrete and practical applications. In so doing they follow their own logic and do not always treat the principles of EBM with the same level of caution. Like everyone else, their thinking is susceptible to all sorts of distortions and misrepresentations, certainly when it comes to probabilistic reasoning. Interaction between providers and patients, moreover, is sometimes far from perfect. All too often, the medical world still maintains a narrow physical model that does not exhibit sufficient harmony with people s personal experience. People are concerned about their health. They actively search for information on the internet and in the media. But the primary obstacle here is discerning the quality of the information on offer. Their assimilation of this information, moreover, is also coloured by emotions. In extreme cases, this can even lead to the explicit rejection of scientific insights. It goes without saying that health information becomes even more important to people when they are facing personal illness or the illness of someone in their immediate environment. It is not only important that patients are correctly informed, care providers must also listen to patients because they have specific knowledge that can be of great importance in determining the best treatment. The tension between science and patients is most explicit in relation to symptoms that cannot be medically explained or when patients turn to non-ebm based therapies such as homeopathy. Our analysis has allowed us to put together a series of potential policy recommendations. We focus in the first instance on the macro-environment: the creation of scientific knowledge and the way in which it is communicated to the population. We then explore the transfer of information in micro-relationships between care providers and patients

5 Page 5 of 6 POLICY RECOMMENDATIONS Here we offer a short summary of our policy recommendations without further argumentation. Arguments and more specific examples can be found throughout the text. INFORMATION AND COMMUNICATION 1. It is essential that the integrity of the scientific endeavour be monitored. The universities develop action plans to curb scientific fraud and suspect research practices. 2. The universities and the government reflect on the distribution of research resources across the various medical research domains and assess the said distribution in the light of social priorities. 3. Research into the implementation of practical guidelines is actively supported, e.g. as a distinct category in applications for research funding. 4. Universities and hospitals put an end to the often oversimplified communication of medical research results at a (much too) early stage. The Flemish Interuniversity Council (Vlaamse Interuniversitaire Raad VLIR) prepares a charter of conduct in this regard for the Flemish universities. 5. Whenever experts are brought in to interpret research results in preparing policy measures, they make an explicit statement with respect to their potential personal interests. 6. Communication places more emphasis on science as process and method, rather than on spectacular results. 7. Education focuses more attention on the importance of the scientific method. 8. Students learn to deal with statistical information in an intelligent and critical manner. 9. The research world contributes actively to the construction of teaching modules that can contribute to the development of health literacy among young people. 10. Government stimulates the distribution of reliable and understandable information among the population using, for example, hospital waiting rooms and doctors surgeries. 11. Government addresses attention to the development of an improved quality label for internet sites providing health-related information and actively promotes the consultation of good sites. 12. Health campaigns should base themselves more on scientifically substantiated insights and methods in order to influence attitudes, social norms and behaviour, in addition to knowledge. Personal testimonies and methods that touch people positively at the affective level can contribute here. 13. More is invested in media training for scientists, paying the necessary attention to the question of integrity. 14. Public advertising of medications is forbidden. 15. When research results are reported in the media, the original source of the given information is always provided. 16. The audio-visual media provide their personnel with explicit training in the correct circulation of scientific information. 17. An active campaign is waged to disarm false information and the denial of science. ORGANISATION OF HEALTH CARE 18. Patients are given a greater say in important decisions (e.g. on screening) and are supported in the process with correct information. Greater effort is applied to the development of procedures and decision aids in order to promote shared decision making. 19. At the beginning of a treatment, personal goals and practical living conditions are discussed with the patient. This information is included in the patient s file. 20. More attention should be paid than has hitherto been the case to the principles of EBM and the development of communication skills in the training of care providers.

6 Page 6 of Multidisciplinary teams are organised in which sufficient expertise is present to ensure both the coordination of the patient s care and communication with the patient. 22. Hospitals reflect on internal information flow and integrate aspects of information and patient input into their organisational structure in a coherent manner. 23. Patients are encouraged more to register with a single practitioner to allow for the construction of a durable relationship of trust. 24. Cooperation between practitioners is reinforced and space is created for specialisation and consultation. 25. Quality indicators are developed for individual care providers, practitioners and care facilities. This can have a steering effect: activities that are not evidence-based should be discouraged and activities that are evidence-based encouraged, with our without financial stimuli. 26. Health care is framed within broader community-based health programmes, whereby attention is also addressed to the health-promoting characteristics of the socio-economic environment and whereby social organisations are encouraged to participate in health-oriented ventures. 27. The principles of EBM play a greater role in decisions concerning the inclusion of treatments in the coverage of compulsory health insurance. Older treatments for which better (and not more expensive) alternatives have been developed are removed from the said coverage. These decisions are communicated with transparency. 28. Forms of alternative medicine not supported by EBM should be removed from the mandatory supplementary health insurance offered by the sickness funds.