Journal of Evidence-Based Medicine ISSN 1756-5391
ARTICLE
Testing treatments interactive (TTi): helping to equip the public to promote better research for better health care Yaolong Chen1,2 and Iain Chalmers
on behalf of the TTi Editorial Alliance*3
1
Evidence Based Medicine Center, School of Basic Medical Sciences, Lanzhou University, Lanzhou, China Key Laboratory of Evidence Based Medicine and Knowledge Translation of Gansu Province, Lanzhou, China 3 James Lind Initiative, Oxford, UK 2
∗
Members of TTi Editorial Alliance’. TTi Arabic: Adib Essali, with Emtithal Rezk; TTi Chinese: Yaolong Chen, with Kehu Yang, Qi Wang and Liang Yao; TTi Deutsch: Gerd Antes, with Simon Ledinek; TTi English: Iain Chalmers, with Paul Glasziou, Douglas Badenoch, Patricia Atkinson, ˜ Giordano Perez ´ Matt Penfold, Amanda Burls, and Ben Goldacre; TTi Espanol: Gaxiola, with Vicente Ruiz Garc´ıa; TTi Euskera (expected summer ` 2015): Marimar Ubeda, with Eukene Ansuategi and Jose Ignacio Emparanza; TTi Franc¸ais: Philippe Ravaud, with Isabelle Boutron, Agnes Dechartres Ludovic Trinquart and Elise Diard; TTi Hrvatska: Livia Puljak, with Damir Sapunar; TTi Italiano: Roberto D’Amico, with Paola Mosconi, Marco Annoni, Sara Balduzzi, Cinzia Colombo, Giulio Formoso, Manuela Martini, Anna Roberto; TTi Norsk: Kjetil Olsen, with Gro Jamtvedt, Atle Fretheim, Astrid Austvoll-Dahlgren, Lillebeth Larun, Lene Kristine Juvet, Liv Merete Reinar, and Berit Gallefoss Denstad; TTi ˆ Karla Soares-Weiser, with Antonio Jose Grande and Florentino Cardoso; TTi Russian (expected summer 2015): Vasiliy V. Vlassov, Portugues: ˘ ˚ Rosen; ´ TTi Turkc ¨ ¸ e: (expected summer 2015): Metin Gulmezo ¨ with Nik Makretsov; TTi Svenska: Ragnar Levi, with Mans glu.
Keywords Evidence based medicine; health literacy; knowledge translation; systematic reviews. Correspondence Yaolong Chen, Evidence Based Medicine Center, School of Basic Medical Sciences, Lanzhou University. No. 199, Donggang West Road, Chengguan District, Lanzhou, Gansu 730000, China. Tel: 86-931-8915890; Fax: 86-931-8915890; Email: [email protected] Received 2 February 2015; accepted for publication 5 February 2015. doi: 10.1111/jebm.12155
Abstract Testing Treatments is a book written to help everyone understand why testing treatments is so important, why treatment tests have to be fair, and how everyone can help to promote better research for better health care. The book proved to be very popular and its second edition has already been translated into a dozen languages, with more translations in the pipeline. The texts of the original English and all the translations are feely downloadable from Testing Treatments interactive at www. testingtreatments.org. The editors of all the different language websites have established an TTi Editorial Alliance, to share experiences and provide each other with mutual support. The TTi Editorial Alliance seeks to promote a world in which health professionals, patients and the public use reliable research to inform their health decisions. Its missions are (i) To promote a global network, involving members of the public in partnership with professionals, to communicate and discuss basic principles and general knowledge about testing treatments; (ii) to help the public increase critical thinking and skills in accessing, apprehending, appraising and using research evidence; and (iii) to help patients and the public to participate more actively in health research.
Waste in Medical Research An analysis published in The Lancet in 2009 suggested that over 85% of the investment in medical research was being avoidably wasted (1). Too often, researchers ignore existing evidence before embarking on new research; address questions and outcomes of no interest; use sloppy research design, execution and analysis; fail to report their results honestly; and do not describe their research in ways that facilitate replication and application in practice. In a follow-up series of six
98
papers published at the beginning of 2014, over 40 authors investigated the sources of research waste in more detail and recommended action that would promote better research for better health care (www.researchwaste.net). Left to itself, the research community seems very unlikely to make the changes needed with the sense of urgency demanded by the currently poor return on public investment in medical research. The public deserves better dividends from its investment in terms of results that inform health care and improve health.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
Testing treatments interactive (TTi)
Getting the right research done is everybody’s business. However, without an increase in public general knowledge about basic concepts, principles and methods of research, and of research to assess the effects of treatments in particular, patients and the public will not be able to play their part as informed contributors to research or become more discriminating users of health services.
The Deficit in Health Literacy How should patients judge whether a treatment is effective? Are new medicines always better than older ones? Is earlier diagnosis always better than later? These important questions of relevance to our health are often not easy to answer. This deficit in health literacy can have consequences for health: people with strong health literacy skills enjoy better health and well-being, while those with weaker skills tend to engage in riskier behavior and have poorer health (2). One key reason for poor health literacy is that people lack the ability to appraise, judge or evaluate health information and research. Lay public understanding of some of the key features of reliable tests of treatments is often woefully inadequate (3). As Zsuzsanna Jakab, regional director for Europe, pointed out in the foreword to a recent WHO report: “As societies grow more complex and people are increasingly bombarded with health information and misinformation and confront complex health care systems, becoming a healthliterate person has become a growing challenge.” (2). This deficit in health literacy is being addressed at many levels— international, national and local—using a variety of media such as books, articles in magazines and newspapers, films, social media, websites, tutorials for key opinion leaders, and so on. This paper describes the development of Testing Treatments interactive that takes advantage of several media forms. We believe it is unusual if not unique because it provides free access to all of the resources included and because it is available in a dozen languages.
Testing treatments 1 In 2002, Imogen Evans, formerly an executive editor at The Lancet, was commissioned by the British Library to write a book for the public about clinical trials. She invited Iain Chalmers, formerly director of UK Cochrane Centre, to coauthor the book, and they agreed that authorship would be strengthened by recruiting a ‘lay’ viewpoint. Hazel Thornton, a breast cancer patient, was recruited because of her longstanding record of independent campaigning for citizen engagement in health research. The first edition of Testing Treatments, Better Research for Better Healthcare was published in 2006 (4). The book was very well received (http://www.testingtreatments.org/tt-main-text/thebook/reviews/). One reviewer described the book as ‘Impor-
Testing treatments interactive (TTi)
tant, scary, and encouraging’—‘important’ because it would enhance general knowledge about fair tests of treatments; ‘scary’ because of the examples used in the book to illustrate how people have suffered and sometimes died because of inadequate assessments of treatments; and ‘encouraging’ because the book points to the various ways in which readers can promote better research for better health care (Box 1). A reviewer for the Journal of the European Medical Writers Association wrote: “This short, educational book encourages users and providers of health care to question assumptions, detect biases, raise questions about the quality of the evidence if they find it unconvincing, and work together to ensure that the right research questions are asked, and the right research is used to find the answers.” (5). The perceived importance of the book was reflected in translations into Arabic, Chinese, German, Italian, Polish and Spanish (with support from PAHO). These and the English texts were made available for free download under a Creative Commons license (we stopped counting after the English version had been downloaded 130,000 times). Box 1. Action plan—10 things you can do 1. Identify questions about the effects of treatment that are important to you. 2. Learn to recognize uncertainty; speak up; ask questions; seek honest answers. 3. Don’t be afraid to ask your doctor what treatments are available; what may happen if you choose a particular treatment; AND what might happen if you don’t. 4. When thinking about possible treatments, you may find the Ottawa information on decision aids helpful.[http://www.ohri.ca/DecisionAid/] 5. Use reliable websites such as NHS Choices. See also: “So what makes for better healthcare”. 6. Be a healthy sceptic about unfounded claims and media reports of treatment ‘breakthroughs’; about the way that ‘numbers’ are reported in the media – especially large numbers in headline claims! 7. Challenge treatments offered to you or your family on the basis of beliefs and dogmas, but unsubstantiated by reliable evidence. Be wary of unnecessary disease ‘labelling’ and over-investigation – find out if the disease in question is considered high risk or low risk for you. Ask what would happen if nothing immediate is done. 8. Agree to participate in a clinical trial only on condition (i) that the study protocol has been registered and made publicly available (ii) that the protocol refers to systematic reviews of existing evidence showing that the trial is justified; and (iii) that you receive a written assurance that the full study results will be published, and sent to all participants who indicate that they wish to receive them.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
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Testing treatments interactive (TTi)
9. Encourage and work with health professionals, researchers, research funders, and others who are trying to promote research addressing inadequately answered questions about the effects of treatment which you regard as important. 10. Encourage wider education about the effects of biases and the play of chance, and lobby your elected political representative and others about doing more to emphasize this in school curricula, beginning in primary schools.
Testing treatments 2 Encouraged by the reception of the first edition of the book, and after recruiting a fourth co-author, Paul Glasziou, a general practitioner formerly director of the Centre for Evidence-Based Medicine in Oxford, the authors published a 2nd edition in 2011 (6). As with the previous edition, the text of the new edition is available for free download, and it is one of the few books featured in the PubMed Health ‘Bookshelf’ operated by the U.S. National Library of Medicine. The text of Testing Treatments is being used as a resource in a variety of ways. For example, it is the basis for a project funded by the Norwegian Research Council to support informed healthcare choices in Uganda. The aim of this initiative is to capitalize on Testing Treatments to promote understanding of the rationale for, methods, uses, and politics of fair tests of the effects of healthcare interventions. Two strategies for improving health literacy are being developed, applied and evaluated: mass media resources for the general public and teaching resources for school children (7).
Testing Treatments Interactive (TTi) At the time that the second edition of the book was launched it was decided to establish a website—Testing Treatments interactive (www.testingtreatments.org), or TTi for short—to help enhance the messages in the book and further improve general knowledge about testing treatments. The website uses the text of the second edition of the book as its core material. Materials in other media, such as videos, audios, cartoons and quizzes have been added to illustrate the ideas, messages and principles covered in the book and to help bring the material to life, and to test user knowledge about these. There is an annual cycle of formal user assessments of the website with modifications made in the light of feedback. For example, there have been repeated calls for a readily accessible, plain language glossary. A first version of this has been developed by the TTi English team in collaboration with colleagues in Norway and Scotland (http://www.decidecollaboration.eu/get-it-glossary-interactive-resources).
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Testing treatments interactive (TTi)
Under the ‘umbrella’ of the ‘parent’ TTi English site, sub sites have been developed to meet some specific needs, for example, those of young people, and for those contributing to one or more of the stages of research—from question formulation to dissemination of results. The emphasis throughout is to invite visitors and users to consider how TTi may be able to help them promote better research for better health care (8; Box 1).
Making these Free Resources Available in Many Languages Even though English is the main language used within the health sciences, most people around the world are not familiar with English (9). From its inception in 2012, therefore, TTi has been committed to making material available in as many other languages as possible. Sibling websites have been set up whenever there have been people who understand the principles of fair tests of treatments and who are committed to maintaining a sibling website in the longer term. Because it was considered important to create TTi sibling sites with some common features, meetings were held in Oxford in January and September 2013 to establish a TTi Editorial Alliance as a forum for establishing common features, and to exchange experiences and methods. Subsequent meetings have been held in Hyderabad in September 2014 and in Oxford in April 2015. These meetings have brought together editors involved in translating the second edition of Testing Treatments and in establishing and managing sibling interactive websites. Feedback from users of TTi has been discussed and further development of the sites planned. Editors proposed their shared vision, mission and target user groups (Box 2), and further defined the resources they wish to include in TTi (Box 3). At the time of writing, TTi sibling websites exist in Arabic, Chinese, Croatian, English, French, German, Italian, Norwegian, Spanish and Turkish. They are in preparation in Euskera, Polish, Portuguese, Russian and Swedish. The TTi Editorial Alliance will create more evidence-based knowledge products to help the public better understand evidence, and thereby play their parts in improving research and enhancing health. It is envisaged that the cycle of evaluation and modification will continue.
Box 2. The Vision, Mission and Target Audience of TTi Vision TTi seeks to promote a world in which health professionals, patients and the public use reliable research to inform their health decisions. Missions TTi’s missions are:
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
Testing treatments interactive (TTi)
1. To promote a global network, involving members of the public in partnership with professionals, to communicate and discuss basic principles and general knowledge about testing treatments; 2. To help the public increase critical thinking and skills in accessing, apprehending, appraising and using research evidence; 3. To help patients and the public to participate more actively in health research. Target Groups The target groups for TTi excludes no-one, but focuses on people and groups interested in learning more about the goals and methods involved in fair tests of treatments. These include the following in particular: 1. Patients and the Public, who are in greatest need of unbiased evidence to inform their decisions, and to protect themselves and their families from untrustworthy treatment claims; 2. Teachers and Students, who want to teach and learn basic principles and methods; 3. Journalists and Science Writers, who report, write, edit, and broadcast information about treatments, so playing an influential role in educating the public. Many health professionals and researchers will also find TTi helpful, particularly as a resource to improve their communications with patients and the public.
Box 3. TTi Resources Testing Treatments—The Book The book combines evidence-based health care and popular science. It urges everyone to become involved in improving current research and thus health care, and outlines practical steps that patients and doctors can take together. The 1st edition was published in 2006; the 2nd in 2011. The book has been translated into many other languages and the texts of the original and all translations can be downloaded free from TTi websites. Testing Treatments—Concepts Based on the book and other sources, collaboration with colleagues in the Informed Healthcare Choices Project6 has resulted in the identification of concepts to help people assess and understand evidence. Some concepts have already been tested as interventions in controlled trials to improve health literacy in low-income countries. The following lists some examples of key concepts identified: 1. Dramatic effects of treatments are rare 2. Theories do not provide a reliable basis for assessing the effects of treatments
Testing treatments interactive (TTi)
3. Personal experiences or anecdotes (stories) do not provide a reliable basis for assessing the effects of treatments 4. Traditional treatments are not necessarily beneficial or safe 5. Opinions of “experts” or “authorities” alone do not provide a reliable basis for assessing the effects of treatments 6. Conflicting interests may result in misleading claims about the effects of treatments 7. Assuming new, brand named or more expensive treatments are better than alternatives is unjustified 8. Assuming that more of a treatment is better than less is not justified 9. Hope can lead to self-delusion about the effects of treatments 10. An outcome may sometimes be associated with a treatment, but not caused by it Testing Treatments—Materials Online learning materials are linked to concepts in Testing Treatments, the book, and are often well suited to contemporary media technology and content sharing.
Summary The public deserves better dividends from its investment in medical research, as judged by research results that inform health care and improve health. However, the changes needed will not happen efficiently without more informed public input to all the main phases of medical research. The challenges facing those who wish to improve public general knowledge about ways in which everyone can play a part in promoting better research for better health care are considerable. Testing Treatments interactive is a multimedia, multilanguage free resource that addresses these challenges.
Competing Interests None declared. References 1. Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet 2009; 374(9683): 86–9. 2. Kickbusch I, Pelikan J, Apfel F, Tsouros A. Health literacy: the solid facts. Copenhagen, Denmark: World Health Organization Regional Office for Europe, 2013. 3. Robinson EJ, Kerr CE, Stevens AJ, Lilford RJ, Braunholtz DA, Edwards SJ, et al. Lay public’s understanding of equipoise and randomisation in randomised controlled trials. Health Technology Assessment 2005; 9(8): 1–92.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
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4. Evans I, Thornton H, Chalmers I. Testing Treatments: Better Research for Better Healthcare, 1st edn. London: British Library, 2006. 5. Shashok K. In the bookstores a call to make patients effective partners in medical research. Journal of the European Medical Writers Association 2007; 16(2): 87–9. 6. Evans I, Thornton H, Chalmers I, Glasziou P. Testing Treatments: Better Research for Better Healthcare, 2nd edn. London: Pinter & Martin Publishers, 2011.
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7. Oxman A. Supporting informed healthcare choices in low-income countries. Project 735: 2012, www.kunnskapssenteret.no/pros jekter/sihclic?language=english (accessed 30 September 2000). 8. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003–2013. Journal of the Royal Society of Medicine 2013; 106(12): 482–91. 9. Chen YL, Yang KH. Avoidable waste in the production and reporting of evidence. Lancet 2009; 374(9692): 786.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
ARTICLE
Testing treatments interactive (TTi): helping to equip the public to promote better research for better health care Yaolong Chen1,2 and Iain Chalmers
on behalf of the TTi Editorial Alliance*3
1
Evidence Based Medicine Center, School of Basic Medical Sciences, Lanzhou University, Lanzhou, China Key Laboratory of Evidence Based Medicine and Knowledge Translation of Gansu Province, Lanzhou, China 3 James Lind Initiative, Oxford, UK 2
∗
Members of TTi Editorial Alliance’. TTi Arabic: Adib Essali, with Emtithal Rezk; TTi Chinese: Yaolong Chen, with Kehu Yang, Qi Wang and Liang Yao; TTi Deutsch: Gerd Antes, with Simon Ledinek; TTi English: Iain Chalmers, with Paul Glasziou, Douglas Badenoch, Patricia Atkinson, ˜ Giordano Perez ´ Matt Penfold, Amanda Burls, and Ben Goldacre; TTi Espanol: Gaxiola, with Vicente Ruiz Garc´ıa; TTi Euskera (expected summer ` 2015): Marimar Ubeda, with Eukene Ansuategi and Jose Ignacio Emparanza; TTi Franc¸ais: Philippe Ravaud, with Isabelle Boutron, Agnes Dechartres Ludovic Trinquart and Elise Diard; TTi Hrvatska: Livia Puljak, with Damir Sapunar; TTi Italiano: Roberto D’Amico, with Paola Mosconi, Marco Annoni, Sara Balduzzi, Cinzia Colombo, Giulio Formoso, Manuela Martini, Anna Roberto; TTi Norsk: Kjetil Olsen, with Gro Jamtvedt, Atle Fretheim, Astrid Austvoll-Dahlgren, Lillebeth Larun, Lene Kristine Juvet, Liv Merete Reinar, and Berit Gallefoss Denstad; TTi ˆ Karla Soares-Weiser, with Antonio Jose Grande and Florentino Cardoso; TTi Russian (expected summer 2015): Vasiliy V. Vlassov, Portugues: ˘ ˚ Rosen; ´ TTi Turkc ¨ ¸ e: (expected summer 2015): Metin Gulmezo ¨ with Nik Makretsov; TTi Svenska: Ragnar Levi, with Mans glu.
Keywords Evidence based medicine; health literacy; knowledge translation; systematic reviews. Correspondence Yaolong Chen, Evidence Based Medicine Center, School of Basic Medical Sciences, Lanzhou University. No. 199, Donggang West Road, Chengguan District, Lanzhou, Gansu 730000, China. Tel: 86-931-8915890; Fax: 86-931-8915890; Email: [email protected] Received 2 February 2015; accepted for publication 5 February 2015. doi: 10.1111/jebm.12155
Abstract Testing Treatments is a book written to help everyone understand why testing treatments is so important, why treatment tests have to be fair, and how everyone can help to promote better research for better health care. The book proved to be very popular and its second edition has already been translated into a dozen languages, with more translations in the pipeline. The texts of the original English and all the translations are feely downloadable from Testing Treatments interactive at www. testingtreatments.org. The editors of all the different language websites have established an TTi Editorial Alliance, to share experiences and provide each other with mutual support. The TTi Editorial Alliance seeks to promote a world in which health professionals, patients and the public use reliable research to inform their health decisions. Its missions are (i) To promote a global network, involving members of the public in partnership with professionals, to communicate and discuss basic principles and general knowledge about testing treatments; (ii) to help the public increase critical thinking and skills in accessing, apprehending, appraising and using research evidence; and (iii) to help patients and the public to participate more actively in health research.
Waste in Medical Research An analysis published in The Lancet in 2009 suggested that over 85% of the investment in medical research was being avoidably wasted (1). Too often, researchers ignore existing evidence before embarking on new research; address questions and outcomes of no interest; use sloppy research design, execution and analysis; fail to report their results honestly; and do not describe their research in ways that facilitate replication and application in practice. In a follow-up series of six
98
papers published at the beginning of 2014, over 40 authors investigated the sources of research waste in more detail and recommended action that would promote better research for better health care (www.researchwaste.net). Left to itself, the research community seems very unlikely to make the changes needed with the sense of urgency demanded by the currently poor return on public investment in medical research. The public deserves better dividends from its investment in terms of results that inform health care and improve health.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
Testing treatments interactive (TTi)
Getting the right research done is everybody’s business. However, without an increase in public general knowledge about basic concepts, principles and methods of research, and of research to assess the effects of treatments in particular, patients and the public will not be able to play their part as informed contributors to research or become more discriminating users of health services.
The Deficit in Health Literacy How should patients judge whether a treatment is effective? Are new medicines always better than older ones? Is earlier diagnosis always better than later? These important questions of relevance to our health are often not easy to answer. This deficit in health literacy can have consequences for health: people with strong health literacy skills enjoy better health and well-being, while those with weaker skills tend to engage in riskier behavior and have poorer health (2). One key reason for poor health literacy is that people lack the ability to appraise, judge or evaluate health information and research. Lay public understanding of some of the key features of reliable tests of treatments is often woefully inadequate (3). As Zsuzsanna Jakab, regional director for Europe, pointed out in the foreword to a recent WHO report: “As societies grow more complex and people are increasingly bombarded with health information and misinformation and confront complex health care systems, becoming a healthliterate person has become a growing challenge.” (2). This deficit in health literacy is being addressed at many levels— international, national and local—using a variety of media such as books, articles in magazines and newspapers, films, social media, websites, tutorials for key opinion leaders, and so on. This paper describes the development of Testing Treatments interactive that takes advantage of several media forms. We believe it is unusual if not unique because it provides free access to all of the resources included and because it is available in a dozen languages.
Testing treatments 1 In 2002, Imogen Evans, formerly an executive editor at The Lancet, was commissioned by the British Library to write a book for the public about clinical trials. She invited Iain Chalmers, formerly director of UK Cochrane Centre, to coauthor the book, and they agreed that authorship would be strengthened by recruiting a ‘lay’ viewpoint. Hazel Thornton, a breast cancer patient, was recruited because of her longstanding record of independent campaigning for citizen engagement in health research. The first edition of Testing Treatments, Better Research for Better Healthcare was published in 2006 (4). The book was very well received (http://www.testingtreatments.org/tt-main-text/thebook/reviews/). One reviewer described the book as ‘Impor-
Testing treatments interactive (TTi)
tant, scary, and encouraging’—‘important’ because it would enhance general knowledge about fair tests of treatments; ‘scary’ because of the examples used in the book to illustrate how people have suffered and sometimes died because of inadequate assessments of treatments; and ‘encouraging’ because the book points to the various ways in which readers can promote better research for better health care (Box 1). A reviewer for the Journal of the European Medical Writers Association wrote: “This short, educational book encourages users and providers of health care to question assumptions, detect biases, raise questions about the quality of the evidence if they find it unconvincing, and work together to ensure that the right research questions are asked, and the right research is used to find the answers.” (5). The perceived importance of the book was reflected in translations into Arabic, Chinese, German, Italian, Polish and Spanish (with support from PAHO). These and the English texts were made available for free download under a Creative Commons license (we stopped counting after the English version had been downloaded 130,000 times). Box 1. Action plan—10 things you can do 1. Identify questions about the effects of treatment that are important to you. 2. Learn to recognize uncertainty; speak up; ask questions; seek honest answers. 3. Don’t be afraid to ask your doctor what treatments are available; what may happen if you choose a particular treatment; AND what might happen if you don’t. 4. When thinking about possible treatments, you may find the Ottawa information on decision aids helpful.[http://www.ohri.ca/DecisionAid/] 5. Use reliable websites such as NHS Choices. See also: “So what makes for better healthcare”. 6. Be a healthy sceptic about unfounded claims and media reports of treatment ‘breakthroughs’; about the way that ‘numbers’ are reported in the media – especially large numbers in headline claims! 7. Challenge treatments offered to you or your family on the basis of beliefs and dogmas, but unsubstantiated by reliable evidence. Be wary of unnecessary disease ‘labelling’ and over-investigation – find out if the disease in question is considered high risk or low risk for you. Ask what would happen if nothing immediate is done. 8. Agree to participate in a clinical trial only on condition (i) that the study protocol has been registered and made publicly available (ii) that the protocol refers to systematic reviews of existing evidence showing that the trial is justified; and (iii) that you receive a written assurance that the full study results will be published, and sent to all participants who indicate that they wish to receive them.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
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Testing treatments interactive (TTi)
9. Encourage and work with health professionals, researchers, research funders, and others who are trying to promote research addressing inadequately answered questions about the effects of treatment which you regard as important. 10. Encourage wider education about the effects of biases and the play of chance, and lobby your elected political representative and others about doing more to emphasize this in school curricula, beginning in primary schools.
Testing treatments 2 Encouraged by the reception of the first edition of the book, and after recruiting a fourth co-author, Paul Glasziou, a general practitioner formerly director of the Centre for Evidence-Based Medicine in Oxford, the authors published a 2nd edition in 2011 (6). As with the previous edition, the text of the new edition is available for free download, and it is one of the few books featured in the PubMed Health ‘Bookshelf’ operated by the U.S. National Library of Medicine. The text of Testing Treatments is being used as a resource in a variety of ways. For example, it is the basis for a project funded by the Norwegian Research Council to support informed healthcare choices in Uganda. The aim of this initiative is to capitalize on Testing Treatments to promote understanding of the rationale for, methods, uses, and politics of fair tests of the effects of healthcare interventions. Two strategies for improving health literacy are being developed, applied and evaluated: mass media resources for the general public and teaching resources for school children (7).
Testing Treatments Interactive (TTi) At the time that the second edition of the book was launched it was decided to establish a website—Testing Treatments interactive (www.testingtreatments.org), or TTi for short—to help enhance the messages in the book and further improve general knowledge about testing treatments. The website uses the text of the second edition of the book as its core material. Materials in other media, such as videos, audios, cartoons and quizzes have been added to illustrate the ideas, messages and principles covered in the book and to help bring the material to life, and to test user knowledge about these. There is an annual cycle of formal user assessments of the website with modifications made in the light of feedback. For example, there have been repeated calls for a readily accessible, plain language glossary. A first version of this has been developed by the TTi English team in collaboration with colleagues in Norway and Scotland (http://www.decidecollaboration.eu/get-it-glossary-interactive-resources).
100
Testing treatments interactive (TTi)
Under the ‘umbrella’ of the ‘parent’ TTi English site, sub sites have been developed to meet some specific needs, for example, those of young people, and for those contributing to one or more of the stages of research—from question formulation to dissemination of results. The emphasis throughout is to invite visitors and users to consider how TTi may be able to help them promote better research for better health care (8; Box 1).
Making these Free Resources Available in Many Languages Even though English is the main language used within the health sciences, most people around the world are not familiar with English (9). From its inception in 2012, therefore, TTi has been committed to making material available in as many other languages as possible. Sibling websites have been set up whenever there have been people who understand the principles of fair tests of treatments and who are committed to maintaining a sibling website in the longer term. Because it was considered important to create TTi sibling sites with some common features, meetings were held in Oxford in January and September 2013 to establish a TTi Editorial Alliance as a forum for establishing common features, and to exchange experiences and methods. Subsequent meetings have been held in Hyderabad in September 2014 and in Oxford in April 2015. These meetings have brought together editors involved in translating the second edition of Testing Treatments and in establishing and managing sibling interactive websites. Feedback from users of TTi has been discussed and further development of the sites planned. Editors proposed their shared vision, mission and target user groups (Box 2), and further defined the resources they wish to include in TTi (Box 3). At the time of writing, TTi sibling websites exist in Arabic, Chinese, Croatian, English, French, German, Italian, Norwegian, Spanish and Turkish. They are in preparation in Euskera, Polish, Portuguese, Russian and Swedish. The TTi Editorial Alliance will create more evidence-based knowledge products to help the public better understand evidence, and thereby play their parts in improving research and enhancing health. It is envisaged that the cycle of evaluation and modification will continue.
Box 2. The Vision, Mission and Target Audience of TTi Vision TTi seeks to promote a world in which health professionals, patients and the public use reliable research to inform their health decisions. Missions TTi’s missions are:
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
Testing treatments interactive (TTi)
1. To promote a global network, involving members of the public in partnership with professionals, to communicate and discuss basic principles and general knowledge about testing treatments; 2. To help the public increase critical thinking and skills in accessing, apprehending, appraising and using research evidence; 3. To help patients and the public to participate more actively in health research. Target Groups The target groups for TTi excludes no-one, but focuses on people and groups interested in learning more about the goals and methods involved in fair tests of treatments. These include the following in particular: 1. Patients and the Public, who are in greatest need of unbiased evidence to inform their decisions, and to protect themselves and their families from untrustworthy treatment claims; 2. Teachers and Students, who want to teach and learn basic principles and methods; 3. Journalists and Science Writers, who report, write, edit, and broadcast information about treatments, so playing an influential role in educating the public. Many health professionals and researchers will also find TTi helpful, particularly as a resource to improve their communications with patients and the public.
Box 3. TTi Resources Testing Treatments—The Book The book combines evidence-based health care and popular science. It urges everyone to become involved in improving current research and thus health care, and outlines practical steps that patients and doctors can take together. The 1st edition was published in 2006; the 2nd in 2011. The book has been translated into many other languages and the texts of the original and all translations can be downloaded free from TTi websites. Testing Treatments—Concepts Based on the book and other sources, collaboration with colleagues in the Informed Healthcare Choices Project6 has resulted in the identification of concepts to help people assess and understand evidence. Some concepts have already been tested as interventions in controlled trials to improve health literacy in low-income countries. The following lists some examples of key concepts identified: 1. Dramatic effects of treatments are rare 2. Theories do not provide a reliable basis for assessing the effects of treatments
Testing treatments interactive (TTi)
3. Personal experiences or anecdotes (stories) do not provide a reliable basis for assessing the effects of treatments 4. Traditional treatments are not necessarily beneficial or safe 5. Opinions of “experts” or “authorities” alone do not provide a reliable basis for assessing the effects of treatments 6. Conflicting interests may result in misleading claims about the effects of treatments 7. Assuming new, brand named or more expensive treatments are better than alternatives is unjustified 8. Assuming that more of a treatment is better than less is not justified 9. Hope can lead to self-delusion about the effects of treatments 10. An outcome may sometimes be associated with a treatment, but not caused by it Testing Treatments—Materials Online learning materials are linked to concepts in Testing Treatments, the book, and are often well suited to contemporary media technology and content sharing.
Summary The public deserves better dividends from its investment in medical research, as judged by research results that inform health care and improve health. However, the changes needed will not happen efficiently without more informed public input to all the main phases of medical research. The challenges facing those who wish to improve public general knowledge about ways in which everyone can play a part in promoting better research for better health care are considerable. Testing Treatments interactive is a multimedia, multilanguage free resource that addresses these challenges.
Competing Interests None declared. References 1. Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet 2009; 374(9683): 86–9. 2. Kickbusch I, Pelikan J, Apfel F, Tsouros A. Health literacy: the solid facts. Copenhagen, Denmark: World Health Organization Regional Office for Europe, 2013. 3. Robinson EJ, Kerr CE, Stevens AJ, Lilford RJ, Braunholtz DA, Edwards SJ, et al. Lay public’s understanding of equipoise and randomisation in randomised controlled trials. Health Technology Assessment 2005; 9(8): 1–92.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
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4. Evans I, Thornton H, Chalmers I. Testing Treatments: Better Research for Better Healthcare, 1st edn. London: British Library, 2006. 5. Shashok K. In the bookstores a call to make patients effective partners in medical research. Journal of the European Medical Writers Association 2007; 16(2): 87–9. 6. Evans I, Thornton H, Chalmers I, Glasziou P. Testing Treatments: Better Research for Better Healthcare, 2nd edn. London: Pinter & Martin Publishers, 2011.
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7. Oxman A. Supporting informed healthcare choices in low-income countries. Project 735: 2012, www.kunnskapssenteret.no/pros jekter/sihclic?language=english (accessed 30 September 2000). 8. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003–2013. Journal of the Royal Society of Medicine 2013; 106(12): 482–91. 9. Chen YL, Yang KH. Avoidable waste in the production and reporting of evidence. Lancet 2009; 374(9692): 786.
C 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd JEBM 8 (2015) 98–102
