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Health literacy and patient information: Developing the methodology for a national evidence-based health website
Patient Education and Counseling 73 (2008) 551–556
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Health literacy and patient information: Developing the methodology for a national evidence-based health website Hilda Bastian * Department of Health Information, German Institute for Quality and Efficiency in Health Care (IQWiG), Dillenburger Str. 27, Cologne 51105, Germany
A R T I C L E I N F O
A B S T R A C T
Article history: Received 3 January 2008 Received in revised form 19 August 2008 Accepted 20 August 2008
Objective: To define evidence-based health information and the conceptual framework and methodology of Germany’s national health information website. Methods: Description of the political and methodological processes in the development of the website Gesundheitsinformation.de/Informed Health Online developed by the Institute of Quality and Efficiency in Health Care (IQWiG). Results: Autonomy, empowerment and health literacy were useful theoretical concepts to guide the definition of evidence-based health information and the objectives and methodologies used for developing this website. These choices had direct practical consequences for the patient information. Conclusion: Evidence-based patient information involves the use of evidence and systematic methodologies in several facets of information provision. These include a process of information development that minimises bias, evidence as the information basis for the content, and the use of evidence-based communication techniques. To be empowering and support patient autonomy, information should be patient-centred and non-directive. Practice implications: Health websites are communication interventions which can have very different objectives and methods. A conceptual framework can help guide these choices and provide a basis for subsequent evaluation. ß 2008 Published by Elsevier Ireland Ltd.
Keywords: Evidence-based patient information Internet Health literacy Empowerment
1. Introduction This article outlines the development of the methodology for Germany’s national health information website for patients and the general public, as well as the conceptual framework underpinning the methods. Central to the legislation establishing this project was the expectation that communicating evidence to patients and the general public should strengthen patient autonomy. Historically, government provision of health information to the community has consisted of campaigns and directive advice. From the late 1990s, some countries have established national patient information websites, with the stated goal of increasing community access to good quality health information. They combine content from multiple sources, often predominantly or solely via links to information providers. The conceptual frameworks of these websites and their contents can be unclear [1]. The USA was first in 1997 [2], followed soon by Canada, England and Australia.
* Tel.: +49 221 3568 5401; fax: +49 221 3568 5881. E-mail address: [email protected]. 0738-3991/$ – see front matter ß 2008 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2008.08.020
Governments have also been investing in assessing evidence on health care. The national health technology assessment agency in some countries produces patient versions of their products. Leading examples are the US Agency for Healthcare Research and Quality (AHRQ), the Swedish Council on Technology Assessment in Health Care (SBU), the National Institute for Health and Clinical Excellence (NICE) in England and the French National Authority for Health (HAS). Of particular note, late in 2005, AHRQ established the John M. Eisenberg Clinical Decisions and Communications Science Center, which also provides methodological support on knowledge translation for consumers [3]. As part of healthcare reforms, the German legislature (the ‘‘Bundestag’’) combined the tasks of evidence evaluation and producing a national health information website within a single new independent institution: the Institute for Quality and Efficiency in Health Care (IQWiG). The role is not to communicate government advice or to conduct national health promotion campaigns, and providing advice to individuals is expressly excluded. Funding is limited to providing information on the internet. The Institute was established under legislation with a nongovernment foundation as its governing body, funded by a levy on
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statutory health insurance transactions [4]. Its Board of Governors consists of representatives of the Federal Ministry for Health, the statutory health insurance funds and health service providers (doctors and hospitals). It also has a consultative Board of Trustees which includes a broad range of stakeholders, such as patients’ organisations, the German Commissioner for Patients’ Issues, medical societies, employers, churches and the pharmaceutical industry. This body is consulted on the Institute’s draft products, but the Institute retains final content and methodological independence. There is also an international Scientific Advisory Board. 2. Methods
information, communication and decision-making, as well as The Cochrane Library. The Department of Health Information also conducts small developmental projects, particularly in the areas of reviewing and communicating evidence, rapid reviewing of qualitative research, readability, web metrics and usability, and methods of keeping evidence up-to-date. Central to this work are local and international collaborations, including participation in the Cochrane Collaboration’s Adverse Effects Methods Group and the GRADE (‘‘Grading of Recommendations, Assessment, Development and Evaluation’’) Working Group, a methodological group focusing on interpreting and communicating the results of evidence.
2.1. Political process 3. Results Unlike many other countries, where government has a large role in the funding and provision of health care, Germany’s healthcare services are self-governed and predominantly funded by statutory health insurance. The national governance body for the healthcare services is called the Federal Joint Committee. It is comprised of representatives of the statutory health insurance funds and the service providers (doctors and hospitals). Patient organisations participate, although not in a voting capacity, and the Federal Ministry of Health has an oversight function. Both the Federal Joint Committee and the Federal Ministry of Health can commission the Institute for Quality and Efficiency in Health Care to undertake tasks within its legislative remit. Shortly after IQWiG began work in late 2004, the Federal Joint Committee commissioned it to develop a methodological proposal for fulfilling its remit in patient information [5]. An Evidence-based Patient Information Sub-Committee was established within the Federal Joint Committee, with which IQWiG liaised in the consultation phase of its proposal. That Sub-Committee included patient representatives as well as representatives of the statutory health insurance funds, doctors and hospitals. The Institute had published the first version of its Methods in November 2004, including a chapter on evidence-based health information for patients and the general public. That chapter was the basis for the proposal to the Federal Joint Committee in March 2005 [5]. In July of 2005, the Evidence-based Patient Information Sub-Committee endorsed the proposal. The website, called Gesundheitsinformation.de was launched by the Minister for Health in February 2006, with an English version called Informed Health Online joining it in May [6]. In 2007, the Bundestag expanded the Institute’s remit in patient information. Subsequently, the Institute’s Board of Governors approved a proposal to build an evidence-based health ‘‘encyclopaedia’’ with coverage of major topics by 2012. Increased funding allowed for expanding the staffing level of the Department of Health Information (14 full-time in 2008) and for commissioning external support, systems and methods development, and some external evaluation. 2.2. Methodological development The methods for producing patient information and the website are described in the Institute’s General Methods [7]. Each version has undergone public consultation, as well as review by the Institute’s international Scientific Advisory Board and international peer review. For the 2008 version of the General Methods [7], a process for evidence review for updating the health information methods was developed. This included a search of systematic reviews in the areas of communication, information and the internet, and handsearching of leading specialty journals in the areas of patient
3.1. Conceptual framework and objectives 3.1.1. Theoretical bases Definable objectives are useful for developing a coherent communication intervention and are necessary for evaluating it. The legislation grounding the Institute emphasised evidence as a basis for its work as well as strengthening patient autonomy. Patient autonomy in fact accords with a central concept underpinning ‘‘evidence-based medicine’’: supporting individual decision-making in accordance with people’s own values [8]. To enable this, patients require both health literacy and empowerment, which are somewhat inter-related. Improving health literacy is a pivotal strategy for enabling people to exercise and increase their autonomy and to be able to use information to improve their health [9–11]. As defined by the World Health Organization [9]: ‘‘Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.’’ Health literacy has been described as having three dimensions: functional literacy (ability to understand and use factual information), interactive literacy (ability to act on information) and critical literacy (an advanced level of cognitive and social skills) [10,11]. Critical literacy is a term that can also capture the scientific literacy needed to assess health claims and risk information more critically [12]. The aim of supporting autonomy, empowerment and health literacy provide the conceptual framework for the Institute’s work in evidence-based health information. This framework leads to an approach which differs fundamentally from much traditional patient information, with direct practical consequences. Primarily this is because while the information and website are used to try to influence knowledge, the commitment to autonomy and empowerment precludes attempting to direct health behaviour. The goal of IQWiG’s website is not to tell people what they should do, but rather, what they could do and how they could think about the potential advantages and disadvantages for themselves. Supporting people’s own values and choices is consistent with the World Health Organization definition of empowerment in health [9]: ‘‘Empowerment may be a social, cultural, psychological or political process through which individuals and social groups are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and achieve
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political, social and cultural action to meet those needs. Through such a process people see a closer correspondence between their goals in life and a sense of how to achieve them, and a relationship between their efforts and life outcomes.’’ Considering this framework and the potential of internet-based health information, the Institute has set out the following objectives for its work [7]: Supporting active and informed decision-making about health issues; promoting the critical use of healthcare services; improving understanding of physical, mental and emotional health; improving understanding of medical and scientific information, including the concept of evidence-based medicine; and enabling support of patients by family and friends. 3.1.2. Evidence-based and patient-centred health information There are several definitions of evidence-based patient information [13–16]. Each definition expects the information to include evidence on benefits, harms and uncertainties, but the implications of the phrase ‘‘evidence-based information’’ reach beyond that [15]. Table 1 spells out the Institute’s definition of evidence-based health information. This addresses evidence in several facets of information provision, including the processes of information development, the information basis for the content, and the techniques used to communicate. The definition is also guided by the objective of improving patient autonomy. This is, in practice, a demanding set of requirements. And it is atypical, both for government health information websites and information on the internet generally [17,18]. Yet without this level of effort, information in both government and non-government websites has been shown to be often incorrect or misleading [17,18], even if there have been extensive efforts to ensure high quality content provision [17]. There is an increasing body of evidence on how to communicate evidence to patients [19–22]. There is less good evidence, though, to guide us on how to improve health literacy [23]. There has been some exploratory research on what uses of language may be empowering in information leaflets and in personal consultations [24–26]. Some of the elements of empowering health communication shown in this work can be translated into the medium of the internet: Addressing what patients want to know; showing interest and respect for what patients think; and respecting patients’ competence. To operationalise this approach, the Institute starts the development of its major information modules with a rapid appraisal of qualitative research into patients’ information needs Table 1 Definition of evidence-based health information. The Institute defines evidence-based health information as information where: The content is based on evidence, particularly systematic reviews The information is developed following systematic methods which aim to minimise bias and maintain neutrality Evidence-based communication techniques are used to meet the goals of informing, supporting and empowering consumers and patients Uncertainties as well as the potential for benefit and harm are discussed Language and framing are neutral and non-directive, so that decisions are made in accordance with the patients’ own values and The information is updated so that it remains evidence-based
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and experiences of the topic. This is supplemented by interviews with patient representatives and sometimes by online surveys. For at least some users of health information, a key element of what they want is to read the personal experiences of other people to whom they can relate [27,28]. Communicating such experiences, when they reflect complementary messages to those within the health information itself, may be psychologically supportive for many users. They may also help render discussion of depersonalised ‘‘averages’’ and statistics more human. As well as incorporating results from qualitative research in major information modules, interviews are undertaken with at least two patients or carers. Quotes from these interviews are used in the text of major articles, and text summaries of these patients’ stories are also published. The Institute’s processes, documentation and methods for these interviews was closely modelled on materials provided by DIPEx (the Database of Patients’ Experiences) [29,30]. 3.1.3. Audience and accessibility A further key methodological consideration for a health information website is the audience it will try to reach and serve. The number of people looking for health information on the internet on any day in high internet use countries is approaching or even exceeding the number of people seeking medical care [31]. In those countries, even in the poorest economic areas and among older people, the majority may have access to the internet via at least one family member [31,32]. People who use the internet to seek health information may be just as likely to be doing it on behalf of others as for themselves [33]. The diffusion of internet information does not only flow via friends and family members. Most journalists, medical professionals or patient counseling services will be informed by information originating from the internet. For IQWiG, the diffusion potential for internet information is at least as important as trying to reach patients directly. It is only by considering the potential for a multiplier effect and downstream use of information that an internet-based strategy can aspire to a significant contribution to its communities’ information needs. With that in view, information seekers and multipliers become a key audience. Information seekers may often be printing off information to share directly with others who are perhaps of lower literacy than themselves. However, they communicate information directly too after first informing themselves. That means they need information that will engage them, meet their information needs and extend their critical health literacy. This deepens the dilemma that all general website producers face in determining at what level to pitch content. There is no one level of comprehensibility that could meet all users’ needs and engage all users’ interest. A level of complexity that is too high will exclude too many users. However, there are also risks in becoming too simplistic. This is not only because users with more advanced needs could be lost. Information that becomes too simple runs the risk of contravening one of the tenets of empowering patient-centred communication described above: respecting people’s competence. While one danger is talking above people’s heads, the other is talking down to them. As the developer of the SMOG readability tool demonstrated, groups with the least levels of education often read articles in popular newspapers and magazines that are at a reading level of grade 10 or 11 on the SMOG (the ‘‘Simple Measure Of Gobbledygook’’) [34]. Nevertheless, many assert, for example, that all patient information should be written at a grade 8 reading level. Simply reducing the size of words and length of sentences as required to achieve grade 8 level will still not meet the needs of many users with lower or no reading skills. Understandability, for people of
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low literacy, moreover, requires far more than simple texts: it may require audio, visual or audio-visual communication. A slavish reliance on measured reading levels may not be helpful, as the tools have major drawbacks [24,35]. Further, learning medical terms, which are often polysyllabic, is a key part of health literacy [27,36]. Simple language peppered with complex terminology may be an important tool for trying to extend people’s health literacy. A reasonable rule of thumb may be to try and stay below college level as much as possible (corresponding to a SMOG grade level of less than 13). Yet much or even most health information on the internet is written at that level, including the information on the major government health websites [1,37,38]. The Institute’s strategy is to have a variety of products that meet differing levels of information needs. The SMOG grade level for representative samples from the different products in IQWiG’s menopause module ranges from just below 10 to just below 12. There is no formally validated readability measure for the German language [39], which is a language with many very large polysyllabic words and long sentences. The Institute has however used readability tools to informally compare the complexity of German texts with each other, including health information in the popular media. Exclusivity in terms of gender and culture represent challenges in accessibility which may be more difficult than the challenges associated with readability. This relates not just to the language used, but visuals and the sensitivity to different cultural norms (particularly in discussing and displaying the human body and some of its functions). Continually improving gender and cultural competence, as well as maintaining disability access standards, is of critical importance to the Institute. 3.2. Content development Fig. 1 shows the topic navigation from the website’s homepage, a feature that is popular with users. The website is highly visual, including the use of graphics and photos. Short animations with soundtracks and visual display of text synchronised with the soundtrack. These more extensive products accompany the major information modules. Table 2 outlines the methodology for developing major modules. The core of these modules is an in-depth article (at least 20 pages long), supported by one or more fact sheets summarising the article in easier-to-understand text. Animations are the information product with the easiest reading level on the website. The most complex products to understand are research summaries. These are in the form of questions, followed by a short answer and then a summary of a systematic review or trial. The primary bases for content of these modules are qualitative research appraisal and systematic reviews. For the module on menopause, for example, a systematic search for systematic reviews and health technology assessments (HTAs) identified 718 potential reviews/HTAs. Of these, 18 were identified as potentially meeting the Institute’s quality and currency standards [40,41]. Of those 18 reviews, 8 were ultimately selected as the basis for statements about effectiveness and adverse effects of interventions. Major modules are topic driven: that is, a topic is selected by the Institute or commissioned by the Federal Joint Committee or Ministry of Health. However, additional fact sheets and research summaries are evidence-driven. The Institute has established a system for scanning systematic reviews and health technology assessments as they are published, searching for those that meet the Institute’s criteria for evidence likely to be of interest to patients or the general public. This system also serves to identify new evidence that may trigger updating of existing information on the website.
Fig. 1. Topic navigation.
In order to draw on an international pool of experts in evidencebased medicine, information can be peer reviewed in English and German. Research summaries are generally only peer reviewed by the authors of the systematic reviews they summarise, so that only the English version peer reviewed. The quality of each translation is reviewed by at least two bi-lingual members of the Department. The German drafts of all core products then go through a consultation process with the stakeholders represented on the Institute’s Board of Trustees. Articles are also reviewed by the (German) patients and patient representatives involved in their development. An additional stage of reader testing was added in Table 2 Content development of major information modules. Rapid appraisal of qualitative research, evidence on information needs and relevant effective communication evidence Interviews with patients, patient representatives and sometimes an online survey Consideration of patient career and decision-making points and existing patient information Search for systematic reviews, particularly on: Treatments Adverse effects Quality assessment of systematic reviews and selection of the best reviews to use as data sources Scoping and drafting of information, using selected qualitative research sources, systematic reviews and other approved sources Patient interviews/stories, and production of relevant additional elements such as graphics, glossary, animations, quizzes
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2008. The Institute also undertakes usability testing, monitoring of website use and external evaluation.
4. Discussion and Conclusion 4.1. Discussion A national health information website is a complex communication intervention, whose key elements include the content of the information and the medium itself. National websites face a large variety of political and social pressures to meet differing expectations, preferences and demands. By locating the responsibility for its national health information website within an independent scientific institute and requiring a methodological approach based on evidence, Germany has chosen to have a strategic focus for its national health information website. Further, it chose an original content model rather than a portal link model or purchase of existing materials. This was to avoid having conflicting information within the website and to privilege high quality over quantity. A medical organisation, the Agency for Quality in Medicine (German acronym A¨ZQ), already offers a portal link of German health information [42]. There are encouraging signs to suggest that this strategy is not only feasible, but potentially successful. The website had its millionth visitor in 2007, with over 300,000 page views in January 2008: a visitor rate comparable to larger and longer-established non-commercial health websites in Germany. It is building up a base of subscribers to its free email newsletter who maintain their subscription and often click on to new and updated information. The website is included in journalists’ lists of Germany’s important independent and trustworthy health websites. In 2008, the first major print product of the Institute’s information will be published by a large statutory insurance fund and provided free to its members. In 2007, the NHS adopted the Institute as a ‘‘knowledge partner’’ for NHS Choices and NHS Direct, and in 2008 the French National Health Authority (HAS) will be translating information into French for use within the French healthcare system as well. A variety of international partners are joining with the Institute to take on the challenge of keeping up-todate with the evidence. 4.2. Conclusions Website objectives tend to focus on providing quality information to a more or less clearly defined potential audience. However, the information is not necessarily tailored to the needs of that audience [1]. Both content quality and audience are important methodological and practical considerations. Further, definitions of quality usually incorporate a variety of implicit theoretical and methodological decisions. However, without an explicit conceptual approach to guide these and many other decisions in website purpose, design and content, a website could lack the benefits of the more structured and focused approach used for many other communication interventions. Autonomy, empowerment and health literacy, coupled with the tenets of ‘‘evidence-based medicine’’, provided a useful guiding framework for the development of Gesundheitsinformation.de/Informed Health Online. It enabled a clear definition of evidence-based health information to be elaborated. The concepts also led to concrete decisions, such as the decisions to be nondirective and patient-centred, and to include patients’ stories. As the knowledge in these chosen conceptual areas grows, the website’s methodology should evolve to accommodate these developments.
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4.3. Practice implications A conceptual framework can help guide many choices in website methodology, and provide a basis for subsequent evaluation. The tenets of evidence-based methodology also provide a basis for meeting many of the website’s objectives, although they create burdens and difficulties as well. The standards and processes are onerous and resource-intensive for the producers of information. And the resultant information and uncertainties it reveals may be challenging for many users [27,43,44]. But there is also an increasing body of research evidence that is showing how these challenges can be managed. And importantly, the evidence base for how to communicate in ways that are psychologically supportive and empowering is growing. The keys to this website’s success will be the extent to which it can both successfully implement this knowledge and attract an audience large enough to have a significant impact in the community. Acknowledgements All members of IQWiG’s Health Information Department contribute to implementation and continuing evolution of this project. Beate Zschorlich and Marco Knelangen have made key contributions to later methodological developments. Peter Sawicki was critical to the development of this methodology and reviewed the manuscript. IQWiG’s Scientific Advisory Board provided critical input, particularly Ingrid Mu¨hlhauser and Holger Schu¨nemann, as did Paul Glasziou from the Centre for Evidence-Based Medicine at the University of Oxford. The agency Dimensional played a key role in website development. DiPEX contributed valuable materials and experiences, particularly Andrew Herxheimer and Sue Ziebland. Funding: There was no external funding for the preparation of this manuscript. Conflict of interest None. References [1] Petch T. Content analysis of selection health information websites: final report. Vancouver: ACTION for Health, Centre for Clinical Epidemiology and Evaluation, Simon Fraser University; April 30, 2004. Accessed December 30, 2007: http://www.sfu.ca/act4hlth/pub/working/Content%20Analysis.pdf. [2] Department of Health and Human Services. Shalala launches healthfinder web site; improves consumer access to health info (press release). Washington: Health and Human Services; April 15, 1997. Accessed December 30, 2007: http://www.hhs.gov/news/press/1997pres/970415.html. [3] Agency for Healthcare Research and Quality. About us: John M. Eisenberg clinical decisions and communications science center. Rockville: Agency for Healthcare Research and Quality; undated. Accessed December 30, 2007: http://effectivehealthcare.ahrq.gov/aboutUs/translate.cfm. [4] German Institute for Quality and Efficiency in Health Care (IQWiG). About us: the Institute. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); December 5, 2007. Accessed December 30, 2007: http:// www.iqwig.de/about-us.21.en.html. [5] German Institute for Quality and Efficiency in Health Care (IQWiG). Evidencebased health information for citizens and patients: a methodological proposal. Commission P04-01: development of a methodological proposal for IQWiG patient information. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); March 2005. Accessed December 30, 2007: http:// www.iqwig.de/index.352.en.html. [6] German Institute for Quality and Efficiency in Health Care (IQWiG). Gesundheitsinformation.de/Informed Health Online. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG). Accessed December 30, 2007 at: http://www.gesundheitsinformation.de and http://www.informedhealthonline.org. [7] German Institute for Quality and Efficiency in Health Care (IQWiG). General methods. Version 3.0. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); 2008. Accessed May 15, 2008 at: http://www.iqwig.de.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Health literacy and patient information: Developing the methodology for a national evidence-based health website Hilda Bastian * Department of Health Information, German Institute for Quality and Efficiency in Health Care (IQWiG), Dillenburger Str. 27, Cologne 51105, Germany
A R T I C L E I N F O
A B S T R A C T
Article history: Received 3 January 2008 Received in revised form 19 August 2008 Accepted 20 August 2008
Objective: To define evidence-based health information and the conceptual framework and methodology of Germany’s national health information website. Methods: Description of the political and methodological processes in the development of the website Gesundheitsinformation.de/Informed Health Online developed by the Institute of Quality and Efficiency in Health Care (IQWiG). Results: Autonomy, empowerment and health literacy were useful theoretical concepts to guide the definition of evidence-based health information and the objectives and methodologies used for developing this website. These choices had direct practical consequences for the patient information. Conclusion: Evidence-based patient information involves the use of evidence and systematic methodologies in several facets of information provision. These include a process of information development that minimises bias, evidence as the information basis for the content, and the use of evidence-based communication techniques. To be empowering and support patient autonomy, information should be patient-centred and non-directive. Practice implications: Health websites are communication interventions which can have very different objectives and methods. A conceptual framework can help guide these choices and provide a basis for subsequent evaluation. ß 2008 Published by Elsevier Ireland Ltd.
Keywords: Evidence-based patient information Internet Health literacy Empowerment
1. Introduction This article outlines the development of the methodology for Germany’s national health information website for patients and the general public, as well as the conceptual framework underpinning the methods. Central to the legislation establishing this project was the expectation that communicating evidence to patients and the general public should strengthen patient autonomy. Historically, government provision of health information to the community has consisted of campaigns and directive advice. From the late 1990s, some countries have established national patient information websites, with the stated goal of increasing community access to good quality health information. They combine content from multiple sources, often predominantly or solely via links to information providers. The conceptual frameworks of these websites and their contents can be unclear [1]. The USA was first in 1997 [2], followed soon by Canada, England and Australia.
* Tel.: +49 221 3568 5401; fax: +49 221 3568 5881. E-mail address: [email protected]. 0738-3991/$ – see front matter ß 2008 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2008.08.020
Governments have also been investing in assessing evidence on health care. The national health technology assessment agency in some countries produces patient versions of their products. Leading examples are the US Agency for Healthcare Research and Quality (AHRQ), the Swedish Council on Technology Assessment in Health Care (SBU), the National Institute for Health and Clinical Excellence (NICE) in England and the French National Authority for Health (HAS). Of particular note, late in 2005, AHRQ established the John M. Eisenberg Clinical Decisions and Communications Science Center, which also provides methodological support on knowledge translation for consumers [3]. As part of healthcare reforms, the German legislature (the ‘‘Bundestag’’) combined the tasks of evidence evaluation and producing a national health information website within a single new independent institution: the Institute for Quality and Efficiency in Health Care (IQWiG). The role is not to communicate government advice or to conduct national health promotion campaigns, and providing advice to individuals is expressly excluded. Funding is limited to providing information on the internet. The Institute was established under legislation with a nongovernment foundation as its governing body, funded by a levy on
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statutory health insurance transactions [4]. Its Board of Governors consists of representatives of the Federal Ministry for Health, the statutory health insurance funds and health service providers (doctors and hospitals). It also has a consultative Board of Trustees which includes a broad range of stakeholders, such as patients’ organisations, the German Commissioner for Patients’ Issues, medical societies, employers, churches and the pharmaceutical industry. This body is consulted on the Institute’s draft products, but the Institute retains final content and methodological independence. There is also an international Scientific Advisory Board. 2. Methods
information, communication and decision-making, as well as The Cochrane Library. The Department of Health Information also conducts small developmental projects, particularly in the areas of reviewing and communicating evidence, rapid reviewing of qualitative research, readability, web metrics and usability, and methods of keeping evidence up-to-date. Central to this work are local and international collaborations, including participation in the Cochrane Collaboration’s Adverse Effects Methods Group and the GRADE (‘‘Grading of Recommendations, Assessment, Development and Evaluation’’) Working Group, a methodological group focusing on interpreting and communicating the results of evidence.
2.1. Political process 3. Results Unlike many other countries, where government has a large role in the funding and provision of health care, Germany’s healthcare services are self-governed and predominantly funded by statutory health insurance. The national governance body for the healthcare services is called the Federal Joint Committee. It is comprised of representatives of the statutory health insurance funds and the service providers (doctors and hospitals). Patient organisations participate, although not in a voting capacity, and the Federal Ministry of Health has an oversight function. Both the Federal Joint Committee and the Federal Ministry of Health can commission the Institute for Quality and Efficiency in Health Care to undertake tasks within its legislative remit. Shortly after IQWiG began work in late 2004, the Federal Joint Committee commissioned it to develop a methodological proposal for fulfilling its remit in patient information [5]. An Evidence-based Patient Information Sub-Committee was established within the Federal Joint Committee, with which IQWiG liaised in the consultation phase of its proposal. That Sub-Committee included patient representatives as well as representatives of the statutory health insurance funds, doctors and hospitals. The Institute had published the first version of its Methods in November 2004, including a chapter on evidence-based health information for patients and the general public. That chapter was the basis for the proposal to the Federal Joint Committee in March 2005 [5]. In July of 2005, the Evidence-based Patient Information Sub-Committee endorsed the proposal. The website, called Gesundheitsinformation.de was launched by the Minister for Health in February 2006, with an English version called Informed Health Online joining it in May [6]. In 2007, the Bundestag expanded the Institute’s remit in patient information. Subsequently, the Institute’s Board of Governors approved a proposal to build an evidence-based health ‘‘encyclopaedia’’ with coverage of major topics by 2012. Increased funding allowed for expanding the staffing level of the Department of Health Information (14 full-time in 2008) and for commissioning external support, systems and methods development, and some external evaluation. 2.2. Methodological development The methods for producing patient information and the website are described in the Institute’s General Methods [7]. Each version has undergone public consultation, as well as review by the Institute’s international Scientific Advisory Board and international peer review. For the 2008 version of the General Methods [7], a process for evidence review for updating the health information methods was developed. This included a search of systematic reviews in the areas of communication, information and the internet, and handsearching of leading specialty journals in the areas of patient
3.1. Conceptual framework and objectives 3.1.1. Theoretical bases Definable objectives are useful for developing a coherent communication intervention and are necessary for evaluating it. The legislation grounding the Institute emphasised evidence as a basis for its work as well as strengthening patient autonomy. Patient autonomy in fact accords with a central concept underpinning ‘‘evidence-based medicine’’: supporting individual decision-making in accordance with people’s own values [8]. To enable this, patients require both health literacy and empowerment, which are somewhat inter-related. Improving health literacy is a pivotal strategy for enabling people to exercise and increase their autonomy and to be able to use information to improve their health [9–11]. As defined by the World Health Organization [9]: ‘‘Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.’’ Health literacy has been described as having three dimensions: functional literacy (ability to understand and use factual information), interactive literacy (ability to act on information) and critical literacy (an advanced level of cognitive and social skills) [10,11]. Critical literacy is a term that can also capture the scientific literacy needed to assess health claims and risk information more critically [12]. The aim of supporting autonomy, empowerment and health literacy provide the conceptual framework for the Institute’s work in evidence-based health information. This framework leads to an approach which differs fundamentally from much traditional patient information, with direct practical consequences. Primarily this is because while the information and website are used to try to influence knowledge, the commitment to autonomy and empowerment precludes attempting to direct health behaviour. The goal of IQWiG’s website is not to tell people what they should do, but rather, what they could do and how they could think about the potential advantages and disadvantages for themselves. Supporting people’s own values and choices is consistent with the World Health Organization definition of empowerment in health [9]: ‘‘Empowerment may be a social, cultural, psychological or political process through which individuals and social groups are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and achieve
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political, social and cultural action to meet those needs. Through such a process people see a closer correspondence between their goals in life and a sense of how to achieve them, and a relationship between their efforts and life outcomes.’’ Considering this framework and the potential of internet-based health information, the Institute has set out the following objectives for its work [7]: Supporting active and informed decision-making about health issues; promoting the critical use of healthcare services; improving understanding of physical, mental and emotional health; improving understanding of medical and scientific information, including the concept of evidence-based medicine; and enabling support of patients by family and friends. 3.1.2. Evidence-based and patient-centred health information There are several definitions of evidence-based patient information [13–16]. Each definition expects the information to include evidence on benefits, harms and uncertainties, but the implications of the phrase ‘‘evidence-based information’’ reach beyond that [15]. Table 1 spells out the Institute’s definition of evidence-based health information. This addresses evidence in several facets of information provision, including the processes of information development, the information basis for the content, and the techniques used to communicate. The definition is also guided by the objective of improving patient autonomy. This is, in practice, a demanding set of requirements. And it is atypical, both for government health information websites and information on the internet generally [17,18]. Yet without this level of effort, information in both government and non-government websites has been shown to be often incorrect or misleading [17,18], even if there have been extensive efforts to ensure high quality content provision [17]. There is an increasing body of evidence on how to communicate evidence to patients [19–22]. There is less good evidence, though, to guide us on how to improve health literacy [23]. There has been some exploratory research on what uses of language may be empowering in information leaflets and in personal consultations [24–26]. Some of the elements of empowering health communication shown in this work can be translated into the medium of the internet: Addressing what patients want to know; showing interest and respect for what patients think; and respecting patients’ competence. To operationalise this approach, the Institute starts the development of its major information modules with a rapid appraisal of qualitative research into patients’ information needs Table 1 Definition of evidence-based health information. The Institute defines evidence-based health information as information where: The content is based on evidence, particularly systematic reviews The information is developed following systematic methods which aim to minimise bias and maintain neutrality Evidence-based communication techniques are used to meet the goals of informing, supporting and empowering consumers and patients Uncertainties as well as the potential for benefit and harm are discussed Language and framing are neutral and non-directive, so that decisions are made in accordance with the patients’ own values and The information is updated so that it remains evidence-based
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and experiences of the topic. This is supplemented by interviews with patient representatives and sometimes by online surveys. For at least some users of health information, a key element of what they want is to read the personal experiences of other people to whom they can relate [27,28]. Communicating such experiences, when they reflect complementary messages to those within the health information itself, may be psychologically supportive for many users. They may also help render discussion of depersonalised ‘‘averages’’ and statistics more human. As well as incorporating results from qualitative research in major information modules, interviews are undertaken with at least two patients or carers. Quotes from these interviews are used in the text of major articles, and text summaries of these patients’ stories are also published. The Institute’s processes, documentation and methods for these interviews was closely modelled on materials provided by DIPEx (the Database of Patients’ Experiences) [29,30]. 3.1.3. Audience and accessibility A further key methodological consideration for a health information website is the audience it will try to reach and serve. The number of people looking for health information on the internet on any day in high internet use countries is approaching or even exceeding the number of people seeking medical care [31]. In those countries, even in the poorest economic areas and among older people, the majority may have access to the internet via at least one family member [31,32]. People who use the internet to seek health information may be just as likely to be doing it on behalf of others as for themselves [33]. The diffusion of internet information does not only flow via friends and family members. Most journalists, medical professionals or patient counseling services will be informed by information originating from the internet. For IQWiG, the diffusion potential for internet information is at least as important as trying to reach patients directly. It is only by considering the potential for a multiplier effect and downstream use of information that an internet-based strategy can aspire to a significant contribution to its communities’ information needs. With that in view, information seekers and multipliers become a key audience. Information seekers may often be printing off information to share directly with others who are perhaps of lower literacy than themselves. However, they communicate information directly too after first informing themselves. That means they need information that will engage them, meet their information needs and extend their critical health literacy. This deepens the dilemma that all general website producers face in determining at what level to pitch content. There is no one level of comprehensibility that could meet all users’ needs and engage all users’ interest. A level of complexity that is too high will exclude too many users. However, there are also risks in becoming too simplistic. This is not only because users with more advanced needs could be lost. Information that becomes too simple runs the risk of contravening one of the tenets of empowering patient-centred communication described above: respecting people’s competence. While one danger is talking above people’s heads, the other is talking down to them. As the developer of the SMOG readability tool demonstrated, groups with the least levels of education often read articles in popular newspapers and magazines that are at a reading level of grade 10 or 11 on the SMOG (the ‘‘Simple Measure Of Gobbledygook’’) [34]. Nevertheless, many assert, for example, that all patient information should be written at a grade 8 reading level. Simply reducing the size of words and length of sentences as required to achieve grade 8 level will still not meet the needs of many users with lower or no reading skills. Understandability, for people of
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low literacy, moreover, requires far more than simple texts: it may require audio, visual or audio-visual communication. A slavish reliance on measured reading levels may not be helpful, as the tools have major drawbacks [24,35]. Further, learning medical terms, which are often polysyllabic, is a key part of health literacy [27,36]. Simple language peppered with complex terminology may be an important tool for trying to extend people’s health literacy. A reasonable rule of thumb may be to try and stay below college level as much as possible (corresponding to a SMOG grade level of less than 13). Yet much or even most health information on the internet is written at that level, including the information on the major government health websites [1,37,38]. The Institute’s strategy is to have a variety of products that meet differing levels of information needs. The SMOG grade level for representative samples from the different products in IQWiG’s menopause module ranges from just below 10 to just below 12. There is no formally validated readability measure for the German language [39], which is a language with many very large polysyllabic words and long sentences. The Institute has however used readability tools to informally compare the complexity of German texts with each other, including health information in the popular media. Exclusivity in terms of gender and culture represent challenges in accessibility which may be more difficult than the challenges associated with readability. This relates not just to the language used, but visuals and the sensitivity to different cultural norms (particularly in discussing and displaying the human body and some of its functions). Continually improving gender and cultural competence, as well as maintaining disability access standards, is of critical importance to the Institute. 3.2. Content development Fig. 1 shows the topic navigation from the website’s homepage, a feature that is popular with users. The website is highly visual, including the use of graphics and photos. Short animations with soundtracks and visual display of text synchronised with the soundtrack. These more extensive products accompany the major information modules. Table 2 outlines the methodology for developing major modules. The core of these modules is an in-depth article (at least 20 pages long), supported by one or more fact sheets summarising the article in easier-to-understand text. Animations are the information product with the easiest reading level on the website. The most complex products to understand are research summaries. These are in the form of questions, followed by a short answer and then a summary of a systematic review or trial. The primary bases for content of these modules are qualitative research appraisal and systematic reviews. For the module on menopause, for example, a systematic search for systematic reviews and health technology assessments (HTAs) identified 718 potential reviews/HTAs. Of these, 18 were identified as potentially meeting the Institute’s quality and currency standards [40,41]. Of those 18 reviews, 8 were ultimately selected as the basis for statements about effectiveness and adverse effects of interventions. Major modules are topic driven: that is, a topic is selected by the Institute or commissioned by the Federal Joint Committee or Ministry of Health. However, additional fact sheets and research summaries are evidence-driven. The Institute has established a system for scanning systematic reviews and health technology assessments as they are published, searching for those that meet the Institute’s criteria for evidence likely to be of interest to patients or the general public. This system also serves to identify new evidence that may trigger updating of existing information on the website.
Fig. 1. Topic navigation.
In order to draw on an international pool of experts in evidencebased medicine, information can be peer reviewed in English and German. Research summaries are generally only peer reviewed by the authors of the systematic reviews they summarise, so that only the English version peer reviewed. The quality of each translation is reviewed by at least two bi-lingual members of the Department. The German drafts of all core products then go through a consultation process with the stakeholders represented on the Institute’s Board of Trustees. Articles are also reviewed by the (German) patients and patient representatives involved in their development. An additional stage of reader testing was added in Table 2 Content development of major information modules. Rapid appraisal of qualitative research, evidence on information needs and relevant effective communication evidence Interviews with patients, patient representatives and sometimes an online survey Consideration of patient career and decision-making points and existing patient information Search for systematic reviews, particularly on: Treatments Adverse effects Quality assessment of systematic reviews and selection of the best reviews to use as data sources Scoping and drafting of information, using selected qualitative research sources, systematic reviews and other approved sources Patient interviews/stories, and production of relevant additional elements such as graphics, glossary, animations, quizzes
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2008. The Institute also undertakes usability testing, monitoring of website use and external evaluation.
4. Discussion and Conclusion 4.1. Discussion A national health information website is a complex communication intervention, whose key elements include the content of the information and the medium itself. National websites face a large variety of political and social pressures to meet differing expectations, preferences and demands. By locating the responsibility for its national health information website within an independent scientific institute and requiring a methodological approach based on evidence, Germany has chosen to have a strategic focus for its national health information website. Further, it chose an original content model rather than a portal link model or purchase of existing materials. This was to avoid having conflicting information within the website and to privilege high quality over quantity. A medical organisation, the Agency for Quality in Medicine (German acronym A¨ZQ), already offers a portal link of German health information [42]. There are encouraging signs to suggest that this strategy is not only feasible, but potentially successful. The website had its millionth visitor in 2007, with over 300,000 page views in January 2008: a visitor rate comparable to larger and longer-established non-commercial health websites in Germany. It is building up a base of subscribers to its free email newsletter who maintain their subscription and often click on to new and updated information. The website is included in journalists’ lists of Germany’s important independent and trustworthy health websites. In 2008, the first major print product of the Institute’s information will be published by a large statutory insurance fund and provided free to its members. In 2007, the NHS adopted the Institute as a ‘‘knowledge partner’’ for NHS Choices and NHS Direct, and in 2008 the French National Health Authority (HAS) will be translating information into French for use within the French healthcare system as well. A variety of international partners are joining with the Institute to take on the challenge of keeping up-todate with the evidence. 4.2. Conclusions Website objectives tend to focus on providing quality information to a more or less clearly defined potential audience. However, the information is not necessarily tailored to the needs of that audience [1]. Both content quality and audience are important methodological and practical considerations. Further, definitions of quality usually incorporate a variety of implicit theoretical and methodological decisions. However, without an explicit conceptual approach to guide these and many other decisions in website purpose, design and content, a website could lack the benefits of the more structured and focused approach used for many other communication interventions. Autonomy, empowerment and health literacy, coupled with the tenets of ‘‘evidence-based medicine’’, provided a useful guiding framework for the development of Gesundheitsinformation.de/Informed Health Online. It enabled a clear definition of evidence-based health information to be elaborated. The concepts also led to concrete decisions, such as the decisions to be nondirective and patient-centred, and to include patients’ stories. As the knowledge in these chosen conceptual areas grows, the website’s methodology should evolve to accommodate these developments.
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4.3. Practice implications A conceptual framework can help guide many choices in website methodology, and provide a basis for subsequent evaluation. The tenets of evidence-based methodology also provide a basis for meeting many of the website’s objectives, although they create burdens and difficulties as well. The standards and processes are onerous and resource-intensive for the producers of information. And the resultant information and uncertainties it reveals may be challenging for many users [27,43,44]. But there is also an increasing body of research evidence that is showing how these challenges can be managed. And importantly, the evidence base for how to communicate in ways that are psychologically supportive and empowering is growing. The keys to this website’s success will be the extent to which it can both successfully implement this knowledge and attract an audience large enough to have a significant impact in the community. Acknowledgements All members of IQWiG’s Health Information Department contribute to implementation and continuing evolution of this project. Beate Zschorlich and Marco Knelangen have made key contributions to later methodological developments. Peter Sawicki was critical to the development of this methodology and reviewed the manuscript. IQWiG’s Scientific Advisory Board provided critical input, particularly Ingrid Mu¨hlhauser and Holger Schu¨nemann, as did Paul Glasziou from the Centre for Evidence-Based Medicine at the University of Oxford. The agency Dimensional played a key role in website development. DiPEX contributed valuable materials and experiences, particularly Andrew Herxheimer and Sue Ziebland. Funding: There was no external funding for the preparation of this manuscript. Conflict of interest None. References [1] Petch T. Content analysis of selection health information websites: final report. Vancouver: ACTION for Health, Centre for Clinical Epidemiology and Evaluation, Simon Fraser University; April 30, 2004. Accessed December 30, 2007: http://www.sfu.ca/act4hlth/pub/working/Content%20Analysis.pdf. [2] Department of Health and Human Services. Shalala launches healthfinder web site; improves consumer access to health info (press release). Washington: Health and Human Services; April 15, 1997. Accessed December 30, 2007: http://www.hhs.gov/news/press/1997pres/970415.html. [3] Agency for Healthcare Research and Quality. About us: John M. Eisenberg clinical decisions and communications science center. Rockville: Agency for Healthcare Research and Quality; undated. Accessed December 30, 2007: http://effectivehealthcare.ahrq.gov/aboutUs/translate.cfm. [4] German Institute for Quality and Efficiency in Health Care (IQWiG). About us: the Institute. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); December 5, 2007. Accessed December 30, 2007: http:// www.iqwig.de/about-us.21.en.html. [5] German Institute for Quality and Efficiency in Health Care (IQWiG). Evidencebased health information for citizens and patients: a methodological proposal. Commission P04-01: development of a methodological proposal for IQWiG patient information. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); March 2005. Accessed December 30, 2007: http:// www.iqwig.de/index.352.en.html. [6] German Institute for Quality and Efficiency in Health Care (IQWiG). Gesundheitsinformation.de/Informed Health Online. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG). Accessed December 30, 2007 at: http://www.gesundheitsinformation.de and http://www.informedhealthonline.org. [7] German Institute for Quality and Efficiency in Health Care (IQWiG). General methods. Version 3.0. Cologne: German Institute for Quality and Efficiency in Health Care (IQWiG); 2008. Accessed May 15, 2008 at: http://www.iqwig.de.
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