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COMMUNICATION FROM THE COMMISSION TO THE
COUNCIL, THE EUROPEAN PARLIAMENT, THE ECONOMIC AND SOCIAL COMMITTEE AND
eEurope 2002: Quality Criteria for Health related Websites TABLE OF CONTENTS Health related web sites are now amongst the most frequently accessed sites on the internet with current estimates indicating that there are now over 100,000 sites offering health related information [1] . As a result of the wealth of information available and its apparent popularity, a number of organisations have begun to provide specific tools for searching, rating, and grading this information, while others have set up codes of conduct by which site providers can attest to their high quality services. The aim of such tools is to assist individuals to sift through the mountains of information available so as to be better able to discern valid and reliable messages from those which are misleading or inaccurate. Recognising that European citizens are avid consumers of health related information on the internet and recognising that they are already using the types of rating system described above, the European Council at Feira on June 19-20 2000 supported an initiative within eEurope 2002 to develop a core set of Quality Criteria for Health Related Websites. Accordingly a series of meetings was held during 2001 which drew together
key players from Government departments, International Organisations,
non-governmental organisations and industry, to explore current practices
and experiments in this field. Some sixty invited participants from all
the Member States, Norway, Switzerland, and the United States of America
took part in the kick-off meeting of June 7-8, 2001: they included delegates
from industrial, medical, and patient interest groups, delegates from
Member States' governments, and key invited speakers from the field of
health information ethics. These individuals, and many others, also took
part in the web-based consultation which was open from august to The focus of the discussions was primarily on the reliability of health related websites as a potential vehicle for health related messages, rather than on the substance and content of the health messages themselves. The specific aim was to draw up a commonly agreed set of simple quality criteria on which Member States, as well as public and private bodies, may draw in the development of quality initiatives for health related websites. These criteria should be applied in addition to relevant Community law [3] .
As a result of the meetings, as well as a web-based public consultation, a core set of quality criteria was established. The criteria may be used as a basis in the development of user guides, voluntary codes of conduct, trustmarks, accreditation systems, or any other initiative adopted by relevant parties, at European, national, regional or organisational level. By using a common set of criteria as a starting point, such initiatives can develop in a focused manner across the European Union. The objectives for the criteria were defined as follows:
It should be noted that the objective was not to develop a method for the implementation of such criteria at a European level. Although some actors in the field have called for an EU trustmark for health related websites which would operate in a way similar to the CE marking of certain goods [4] [5] , such initiatives are not within the ambit of the eEurope2002 action. They may, however, be considered within future eEurope action plans and other European programmes. It should also be noted that while this Communication is addressed to the Member States of the European Union and private or public bodies operating in those States, due consideration should be given to the global nature of information disseminated through websites. Accordingly bodies adopting measures to implement the criteria should be aware of the fact that their information will be accessed by many individuals of different nations and cultures. In particular, attention should be paid to the fact that the developing world is a keen consumer of health information and that culturally specific content should be clearly identifiable as such.
The following table sets out the resulting quality criteria; the ensuing text then explores some of the ways in which they may be implemented. This illustrates what could be done at national or regional level to promote high quality, accessible health related information to the European citizen. The table may easily be detached from the present text to form a simple reminder of the key Quality Criteria for Health related Websites.
The criteria set out above are designed to be applicable to the development and maintenance of a health related site irrespective of the type of information or audience to whom the information is targeted. However, one essential quality criterion is that a health-related web site should state clearly what is its target audience and that care should be taken to ensure that both the style and nature of the information, and its presentation, are appropriate for the chosen audience. A number of the respondents to the consultation on the draft criteria, which was conducted between August and October 2001 via the eEurope website, identified the need to address not only site development and maintenance, but also the specific quality issues particular to health related content. [6] When tailoring the content to a chosen audience, a number of factors should be borne in mind in addition to those set out above which should govern the construction of a site. These factors may be considered under the same broad headings as the general site development criteria:
2.2 Authority of Health Related Content Providers
Where specific health related data are provided, the relevance of such content should be regularly verified.
Where specific health related user feedback is provided by the site, particularly where personalised medical advice is offered, every effort should be made to ensure that such advice is bona fide and that advisors are suitably qualified to offer advice.
3.1 Issues for the European Community The purpose of the eEurope 2002 action on Quality Criteria for health-related Websites was to encourage the adoption of a common set of basic quality criteria for such sites. The issue of whether and how these criteria might be implemented at European level was not within the terms of the action. The implicit assumption was that this was a matter to be addressed in Member States at national or regional level, making use of the wide range of private and not-for-profit organisations which are already operating systems for implementing quality criteria for health-related websites. In view of the rapid increase in health-related websites in the European Union and the increase in the number of European Union citizens consulting such sites, it could be argued that there would be merit in the Community establishing its own system for implementing agreed quality criteria. Such a Community-sponsored system would however require considerable resources to set up and operate, and it is unclear that it would offer clear value added to the Member States. The Commission therefore considers that at the moment the difficulties inherent in a Community system would outweigh any possible advantages. Nevertheless, the issue of how and how effectively quality criteria are being implemented is of considerable significance at the European level. To ensure that European citizens have access to reliable health information on the Internet implies not only that there is a consensus on the necessary quality standards, but that those standards are satisfactorily implemented right across the European Union. This does not mean that the same method of implementation should be used everywhere – indeed it must be doubtful that any particular mechanism would be appropriate in all circumstances and in all countries For example, in pharmaceuticals the Commission is considering ways of meeting the growing demand by patients to be able to access information directly about their medicines. The Commission has included proposals within the current review of EU pharmaceutical legislation, Review 2001, to take account of this growing demand. This has also been recently reinforced by the work of the High Level Group on Innovation and Provision of Medicines – G10 Medicines – which has covered this area in their reports. However, whatever system adopted, there should be clarity about the mechanisms being used in the different Member States and the extent of the involvement of the national and regional health authorities. With the forthcoming enlargement of the European Union, this requirement for transparency becomes even greater.
3.2.1 Simple Codes of Conduct A number of organisations have adopted an approach similar to that described in this Communication, of setting up meetings and consultations between experts in order to establish by consensus a set of quality criteria. The eHealth Code of Ethics adopted in May by the Internet Health Coalition [7] is perhaps the best known of such 'codes of conduct'. The object of this and other similar codes is to offer a process of self-assessment by health site providers. However, a basic code of good conduct, or set of quality criteria will form the basis of all the approaches described below. The way in which such codes are implemented varies. Where the code is adopted by an umbrella organisation, such as the Pharmaceutical Group of the European Union, then the organisation itself seeks to ensure that all members comply with the code. In other cases a code has been adopted for the purposes of in-house application only, as in the case of the American Medical Association. Although other organisations may cite the code, and claim to use it, the organisation developing the code makes no attempt to ensure that other parties are in fact implementing it. The costs of the code of conduct approach are generally rather low, requiring only an initial outlay on meetings to draw up the code. However, the benefit of such codes can also be rather limited given the absence of effective enforcement mechanisms. A code of conduct which addresses issues concerning the protection of personal could in itself form a Code of Conduct relevant to a specific area of practice as foreseen in Article 27 of Directive 95/ 46/ EC on Data Protection. Any such draft community code, and amendments or extensions to existing Community codes, may be submitted to the Working Party established by Article 29 of Directive 95/ 46/ EC on data protection. Similarly, a Code of Conduct which addresses the particular issues of electronic commerce in the health domain may be drafted in accordance with the framework foreseen in Article 16.1 of the Directive 2000/ 31/ EC on Electronic Commerce.
A next step in the implementation of a code of conduct can be characterised as the self applied quality label. In such a case a third party organisation develops a code of conduct and allows those who undertake to abide by the terms of the code to display a label, seal or logo which certifies compliance with the code. The oldest, and perhaps best known, of such labels is the Health on the Net Foundation (HON) [8] label whose eight point set of quality criteria is currently used by more than 3000 internet sites worldwide. A site provider wishing to use the HON label has to make a formal application and a commitment to strictly observe all the HON code principles. Compliant sites identify themselves by the HON code hyperlink (or "active") seal displayed at a prominent location. The seal is termed 'active' because clicking on it links the user to the HON site. Conformity with the HON code principles is verified by the team of checkers at HON. HON cannot prevent dishonest operators from simply cutting and pasting the HON code seal onto their Web sites in a bid to enhance their credibility. It does, however, conduct random checks on subscribers to ensure they remain compliant with the HON code By way of additional policing, the Internet community is invited to report misuse of the label.
A further application of the code of good conduct takes the form of a user guidance tool. In this case compliance with a code is demonstrated not by a label, but by a link to a guidance tool which invites the user to check for him or herself if a site and its contents comply with pre-set criteria. A typical such tool is displayed by the site as a logo on which the user may click to reveal a series of questions with which to interrogate the site so as to assess whether the information offered is trustworthy. Such tools may be specific to a particular type of information, such as DISCERN [9] which provides a brief questionnaire through which users gain a valid and reliable way of assessing the quality of written information on treatment choices for a health problem. Other tools seek to give guidance on the trustworthiness of any health-related information. An example of this is NETSCORING [10] , which uses a questionnaire of 49 criteria falling into eight categories: credibility, content, links, design, interactivity, quantitative aspects, ethics, and accessibility. Yet other tools are targeted at particular categories of internet users. For example, the QUICK [11] tool seeks to provide children with a step-by-step guide to assessing health related information on the internet. While such tools are frequently adopted for the guidance of users by national health portals (such as National Health Service DIRECT in England and Wales), they may also be used as site development tools by authors and publishers of information since they define the standards which users are entitled to expect. The financial costs of the user guide are low, often not extending beyond the initial development costs. However, the burden of the use of this kind of tool falls on the internet user, mostly because of the time it takes to apply, which reduces the incentive to use it. Where a guidance tool is provided by a third party to a user to apply for him or herself, a filtering tool is applied to provide a searchable database of filtered and accredited information. Such filtering tools are often based on the gateway approach to organising access to Internet. The fundamentals of this approach are that Internet resources are selected for their quality and relevance to a particular target audience. They are then reviewed and resource descriptions created, which are stored, generally with the associated metadata, and generally in a structured database. The consequence of this effort is to improve the recall, and especially the precision, of Internet searches for a particular group of users.
An example of this type of tool is found in the OMNI site (Organising Medical Networked Information) [12] which provides a gateway to evaluated, quality Internet resources in health and medicine, aimed at students, researchers, academics and practitioners in the health and medical sciences. The costs of such a filtering tool are relatively high in that a team of trained experts must be employed to search for, abstract and classify information on the internet in order that it may be entered into the database. The benefits of such a tool, for the initiated user, are also high since it provides a valuable shortcut to individual searches of the internet using non-specific search engines. 3.2.5 Third Party Quality and Accreditation Labels The most advanced, and also most costly, of the mechanisms available for implementing quality criteria for health related websites, is the third party accreditation system. A third party issues a label to certify the compliance of the site with the criteria of evaluation. A range of implementations fall into this category, from lower cost intra-organisation bodies for quality certification, acting in a similar to the notified bodies used in CE marking, to high cost external independent assessors who perform audits and grant accreditation. At present no third party accreditation bodies are fully operational in Europe, although two noteworthy pilots are running in MEDCERTAIN (a demonstration project of the European Union "Safer Internet Action Plan") and TNO QMIC, a pilot study of the Netherlands Organisation for Applied Scientific Research. In the case of MEDCERTAIN [13] a series
of levels of accreditation are envisaged, starting with a self-certification
label in which the provider of the site uses the MEDCERTAIN meta-labelling
The general purpose of any quality initiative, whatever method of implementation is chosen, must be the protection of the consumer. However, in some cases that general purpose may be best achieved through educating the user of the service while in other cases the provider of the service will be the target of the quality initiative. In order to assist in the selection of an appropriate implementation method, the targeted purposes of the various methods are examined in more detail below In their daily lives as consumers of information delivered via the traditional media, most people learn to use a wide range of assessment tools: judging the nature of the outlet providing the information (a general or specialist bookshop or a work exclusively available from the author), the look and feel of the publication as a whole (a magazine with several contributions or a one page pamphlet). In addition, most people know whom to contact for further information (librarian, bookshop assistant, publisher). In the world of internet content, however, it is less evident what are the relevant indicators of quality. It is for this reason that quality marks and user guides have proliferated, namely to educate the consumer and to provide a recognisable "quality" label which site creators may use to promote their sites. Accordingly, for such codes to be effective it is highly important that the public are informed about the existence of the Codes through public education campaigns. The purpose of quality marks is not, however, simply to provide access
to qualified information but also to assist the citizen in coping with
the torrent of information which a search on a health related subject
might produce: it has been said that "trying to get information form
the internet is like drinking from a fire hose. You don't even know what
the source of the water is" [15]
. In order to try to manage the flow from the fire hydrant into a steady
stream from a tap, some organisations have developed and applied tools
for rating web sites in order that they may offer pre-selected and more
easily searchable sources to their consumers
The problem is not only with the torrent of information, but also with the behaviour of its purveyors. Whilst it may take considerable effort to find an outlet for unusual or extreme ideas in the traditional media, virtually anyone with a modicum of computer skills and very little money can create their own website. The objective of many of the code of conduct initiatives is therefore to educate both the providers and consumers of information about the processes and good practices that a website should be able to demonstrate. In order to educate not only the provider, but also the consumer of information a further set of actors have developed a wide range of user assessment tools. Such tools are usually in the form of on-line check lists which ask the consumer to check off types of information as they find them: statement of aim, explicit statement of source of information, explicit date of information, etc. Some may be rather short (HON), some quite detailed (NETSCORING); some are aimed at specific markets (DISCERN – for treatment choices) and some aimed at children (QUICK) to mention but a few. Most of the organisations publishing and administering such codes operate on a simple self-labelling processes in which the site provider undertakes to follow the code and in return displays its "trustmark" relying on spot check and vigilant users to identify those who are not complying with the given code of conduct. While this may not be as effective as a fully policed trustmark system of the type we are used to seeing as regards, for example, electronic products, it nonetheless addresses a need in a reasonably effective manner. The eEurope initiative was launched by the European Commission on 8 th December 1999, with the adoption of the Communication 'eEurope – An Information Society for all (COM (1999), 687 final, of 8.12.1999) '. The "eEurope 2002 Action Plan -An Information Society For All", was adopted by the Commission on 14 th June 2000, and politically endorsed by the European Council in Feira (Portugal) on 19-20 June 2000. It detailed the policy actions which are required to meet these objectives by 2002 . The eEurope 2005 Action Plan (COM (2002) 263 final, of 28.5.2002), was adopted by the Commission on 28 May 2002 and politically supported by the European Council in Sevilla (Spain) on 21 -22 nd June 2002. It, notably, set the objective for Europe to have, by 2005, "Modern online public services". To achieve this objective, one of the proposed actions is to promote e-health services. It also commits the Commission to monitor "actions taken by Member States to make health information as accessible as possible to citizens as well as initiatives to implement quality criteria for web sites". In this respect, the eEurope 2005 Action Plan affirms that "it is critical that e-health content and services are developed efficiently, are available for all and health related web sites comply with established quality criteria". With respect to the enlargement of the European Union it should also be noted that the eEurope+ Action Plan, which was adopted by the accession States to mirror the eEurope 2002 Action Plan, includes similar action on quality criteria for health related websites. Accordingly it will also be important to monitor the activities undertaken pursuant to that Action Plan. This Communication sets the scene for the implementation of a core set of quality criteria in Member States for health related web sites, within the context of the relevant existing Community legislation (as listed in footnote 3) and in accordance with the requirements of that legislation. The set of quality criteria is based upon a broad consensus among specialists in this field, health authorities, and prospective users. It is now to be expected that national and regional health authorities, relevant professional associations, and private medical website owners will:
Finally, within the context of the Information Society activities and as part of the implementation of the European Union public health programme, consideration will be given to the possibilities of developing and operating a joint action, with the plans drawn up under eEurope, to improve availability to the general public on the Internet of information on health matters, and considering the possibilities for establishing a system of recognisable Community seals of approval for Internet sites.
Accessibility As well as ensuring that data are correct within the terms of the site providers' definitions, effort should be made to make the content of a website accessible to people with disabilities, including sensory impairments and learning difficulties. Guidelines for making websites and their content accessible to all users have been developed in the Communication: eEurope2002: "Accessibility of Public Websites and their Content" (COM (2001) 529fin of 25 September 2001).
Accountability for a website is defined as a system by which a named person or persons have a duty to respond to the questions and issues raised by users in a reasonable time. In a small organisation this may be one person who simultaneously performs many other tasks. Easy to use tools for providing feedback to a site should be used wherever appropriate.
Where information is provided by a person or organisation on the basis of profession, such as physician, nurse, midwife or other health professional, the qualification and where and when it was obtained, should be made clearly visible on the site. Where possible, links to the organisation issuing the qualification should be provided.
The term as used in the Guidelines includes any financial, material or in-kind support provided by organisations or individuals towards the development or maintenance of the website
Interoperability is defined under Directive 91/ 250/ EC [16] (Whereas 12) as "functional interconnection and interaction" and is "the ability to exchange information and mutually to use the information which has been exchanged;" In relation to web-based health services it is the possibility for two or more systems to functionally interconnect and interact.
The term is used in the Guidelines within in the terms of Directive 95/
46/ EC on Data Protection to mean any information relating to an identified
or identifiable natural person. An identifiable person is one who can
be identified, directly or indirectly, in particular by reference to an
identification number or to one or more factors specific to his physical,
physiological, mental, economic, cultural or social identity.
The term is used in the Guidelines within the terms of Directive 95/ 46/ EC as "any operation or set of operations which is performed upon personal data, whether or not by automatic means, such as collection, recording, organisation, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, blocking, erasure or destruction.
Representatives from Industry and Industry Interest Groups
Representatives from Academia
Representatives from Non Governmental Organisations, International Organisations and Special Interest Groups
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