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COMMUNICATION
FROM THE COMMISSION TO THE COUNCIL, THE EUROPEAN PARLIAMENT, THE
ECONOMIC AND SOCIAL COMMITTEE AND THE COMMITTEE OF THE REGIONS -
eEurope 2002: Quality Criteria for related Websites
1 Introduction
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 November 2001 [2].
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.
In particular Directives
93/13/EEC of 5 April 1993 on unfair terms in consumer contracts, OJ L
95, 21.4.1993, p.29; 97/7/EC of 20 May 1997 on the protection of
consumers in respect of distance contracts, OJ L 144, 4.6.1997, p. 19;
84/450/EEC of 10 September 1984 concerning misleading and comparative
advertising, OJ L 250, 19.9.1984, p.17; 92/59/EEC of 29 June 1992 on
general product safety, OJ L 228, 11.8.1992, p. 24; 85/374/EEC of 25
July 1985 concerning liability for defective products, OJ L 210,
7.8.1985, p.29, 2000/31/EC on electronic commerce, OJ L 178, 17.7.2000,
p. 1; 95/46/EC of 24 October 1995 on the protection of individuals with
regard to the processing of personal data and on the free movement of
such data, OJ L 281, 23.11.1995, p. 31;2002/58/EC of July 12 2002
concerning the Processing of personal data and the protection of
privacy in the electronic communications sector OJ L 201 31.7.2002
p.37; 93/42/EEC of 14 June 1993 on medical devices, OJ L 169,
12.7.1993; and 92/28/EEC of 31 March 1992 on the advertising of
medicinal products, OJ L 113, 30.4.1992, p. 13.
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:
*
The quality criteria should address issues of both supplier and user
education: one document that simultaneously tells suppliers how to
comply with key quality criteria and educates users as to what they
ought to expect from a good health website;
* The quality
criteria should address both passive information-giving sites as well
as sites that allow for transactions between service or information
providers and users (i.e. information, products and services).
*
The quality criteria should facilitate compliance with EU Directives,
other current guidelines, and technical standards relevant to this area.
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.
[4] See for
example Forsström J, Rigby M, Roberts R, Nilssen S-I, Wyatt J, Beier B,
Delfosse I: Towards Evaluation and Certification of Telematics Services
for Health (TEAC-Health) - Key Recommendations (Final Report of the EU
Health Telematics Application Programme project HC 4101, Towards
European Accreditation and Certification in Health (TEAC-Health));
University of Turku, Turku, 1999. (available on
www.multimedica.com/TEAC)
[5] Rigby M, Forsström J, Roberts R,
Wyatt J: Verifying Quality and Safety in Health Informatics Services;
British Medical Journal, 2001, vol 323 pp552-556.
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.
Quality Criteria for Health Related Websites
Developed
in widespread consultation with representatives of private and public
eHealth websites and information providers, other industrial
representatives, public officials, and representatives of government
departments, international organisations, and non-governmental
organisations.
These criteria should be applied in addition to relevant Community law
Transparency and Honesty
*
Transparency of provider of site - including name, physical address and
electronic address of the person or organisation responsible for the
site (see Article 5 and 6 Directive 2000/31/EC on Electronic Commerce).
* Transparency of purpose and objective of the site
* Target audience clearly defined (further detail on purpose, multiple audience could be defined at different levels).
* Transparency of all sources of funding for site (grants, sponsors, advertisers, non-profit, voluntary assistance).
Authority
* Clear statement of sources for all information provided and date of publication of source.
*
Name and credentials of all human/institutional providers of
information put up on the site, including dates at which credentials
were received.
Privacy and data protection
* Privacy and
data protection policy and system for the processing of personal data,
including processing invisible to users, to be clearly defined in
accordance with community Data Protection legislation (Directives
95/46/EC and 2002/58/EC).
Updating of information
* Clear
and regular updating of the site, with date of up-date clearly
displayed for each page and/or item as relevant. Regular checking of
relevance of information.
Accountability
* Accountability
- user feedback, and appropriate oversight responsibility (such as a
named quality compliance officer for each site).
* Responsible
partnering - all efforts should be made to ensure that partnering or
linking to other websites is undertaken only with trustworthy
individuals and organisations who themselves comply with relevant codes
of good practice.
* Editorial policy - clear statement describing what procedure was used for selection of content.
Accessibility
*
Accessibility - attention to guidelines on physical accessibility as
well as general findability, searchability, readability, usability, etc.
Relevant Community Law is listed in footnote 3. Terms in italics are further discussed in the Glossary of Terms
2 Tailoring the Criteria for different types of Health Related Content
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]
[6] The European Network of Health
Promotion Agencies and The Pharmaceutical Group of the European Union
kindly offered detailed commentaries on the health specific content.
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:
2.1 Transparency of Health Related Content
*
Transparency of the health related objectives of the provider of the
information, including the purpose and objective of content provision,
should be clearly defined and stated.
* Where advice or
information on particular conditions, lifestyles or medications is
given, funding from producers of products thereby implicitly or
explicitly endorsed should be transparent to the site user.
*
Existing Community legislation already contains information and
transparency requirements. For example Article 5 of Directive
2000/31/EC on electronic commerce concerns the general information to
be provided by an Information Society Services provider; Article 6 of
Directive 2000/31 which concerns additional information to be provided
in the case of commercial communications which are part of or
constitute an information society service and Article 10 of Directive
95/46/EC on the protection of individuals with regard to the processing
of personal data and on the free movement of such data also applies.
2.2 Authority of Health Related Content Providers
*
Where a policy of using only accredited medical professionals to
generate content is adopted, this should be clearly stated and adhered
to.
* Where a mixed group of content providers is used, (medical
professionals, journalists, personal testimony, etc) the category of
content provider of each item should be clearly identifiable.
* Where scientific evidence is cited, the sources of such evidence should be easily identifiable to the user.
*
Where a medicinal product is recommended, EU legislation on Medicinal
Product advertising should be adhered to, and any documents authorised
by a regulatory authority should be made available to the site user.
*
Where advice is offered, the site provider should always include a
reminder that internet based advice, whether personalised or not,
cannot replace a face to face consultation with a healthcare
practitioner.
2.3 Privacy and data protection of Health Data
*
Where any personal information is collected and further processed by
the site user, including data processing invisible to the users, the
requirements of Directive 95/46/EC on the protection of individuals
with regard to the processing of personal data and on the free movement
of such data, in particular article 8 on sensitive and health data,
should be carefully assessed and full compliance assured.
2.4 Updating of Health Related Information
* Where specific health related data are provided, the relevance of such content should be regularly verified.
2.5 Accountability for Health Related Content
*
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.
2.6 Accessibility in Health Related Content
*
Where a particular type of audience is targeted (eg children), the
presentation and content of information should be appropriate to the
chosen target audience.
* The use of a metadata labelling system
may be used to make health data more findable. Such a system may also
be used in conjunction with quality criteria to give higher ranking by
search engines to those sites or pages labelled as complying with
defined quality criteria.
* Apply International or European
standards, wherever possible, in order to facilitate notably the
interoperability between different services and the cross-border
provision of web based health services.
*
3 Implementation of the Quality Criteria for Health related Websites
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 Some Examples of Methods of implementing Quality Criteria
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 2000 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.
[7] Internet Health Coalition: http:// www.ihealthcoalition.org
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.
3.2.2 Self Applied Code of Conduct or Quality Label
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.
[8]
HON Foundation: http:// www.hon.ch The Health On the Net Foundation
(HON), created in 1995, is a not-for-profit International Swiss
Organisation. Its mission is to guide lay persons or non-medical users
and medical practitioners to useful and reliable online medical and
health information. The major sponsors of Health On the Net Foundation
are the State of Geneva, Geneva University Hospital, the Swiss
Institute of Bioinformatics, and Sun Microsystems.
The costs of
this system of applied labelling are not very high, requiring a
relatively small team to process applications for use, maintain random
checks of sites displaying the label and respond to any reports of
misuse. The benefits may be significant in drawing to the attention of
users the importance of the criteria inherent in the label. However,
the benefits must be weighed against the requirement of the users of
the sites to understand the nature of the label, and perhaps more
importantly, to care about its aims and objectives.
3.2.3 User Guidance Tools
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.
[9] Discern: http:// discern.org.uk The DISCERN
Instrument is a questionnaire which can be used to judge the
reliability of a publication as a source of information about treatment
choices. The DISCERN Project was funded from 1996-7 by The British
Library and the NHS Executive Research & Development Programme.
[10]
Netscoring: http:// www.chu-rouen.fr NETSCORING was developed to
provide a set of criteria that can be consistently used to assess the
quality of health information on the Internet. There are 49 criteria
which fall into eight categories: credibility, content, links, design,
interactivity, quantitative aspects, ethics, and accessibility. It was
developed at the Centre Hospitalier Universitaire de Rouen.
[11]
QUICK: http:// www.quick.org.uk QUICK is designed to be used as a
teaching aid in an educational setting: a classroom, library, resource
centre, homework centre or computer club. It can be used as an integral
part of the curriculum, in connection with information skills and
critical awareness teaching. Supported by UK Health Development Agency
and the UK Centre for Health Information Quality.
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.
3.2.4 Filtering tools
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.
[12] OMNI :
http:// www.biome.ac.uk OMNI (Organising Medical Networked Information)
is a gateway to evaluated quality Internet resources in health and
medicine, aimed at students, researchers, academics and practitioners
in the health and medical sciences. OMNI is created by a core team of
specialists based at the University of Nottingham Greenfield Medical
Library, in partnership with key organisations throughout the UK and
further afield. OMNI is one of the gateways within the BIOME service
(http://biome.ac.uk/ ), and is funded by the Joint Information Systems
Committee through the Resource Discovery Network (RDN).
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 system which
incorporates a machine read language to describe and evaluate health
information on the Internet. These labels are then in turn used to
place a given item of site correctly within a gateway system, such as
the OMNI system described above. The next level envisaged by MEDCERTAIN
is one in which non-medical experts personally check the site for
compliance with the level 1 tagging and also against the agreed set of
quality criteria. The highest level involves medical assessment of the
content and a rating of the content by relevant healthcare
professionals.
[13] MEDCERTAIN: http:// www.medcertain.org
MEDCERTAIN establishes a fully functional demonstrator for a self and
third-party rating system enabling patients and consumers to filter
harmful health information and to positively identify and select high
quality information. It is a project of the Action Plan on promoting
safer use of the Internet (Decision no. 276/1999/EC) of the European
Parliament and of the Council of 25 January 1999.
The QMIC [14]
system, on the other hand, envisages a system similar to the ISO
9000:2000 standard. The QMIC system is based on a complex set of
standards drawn up by the third party (TNO in this case) but
implemented by the site provider through an internal 'quality
certification body' who is in turn regularly assessed by the third
party organisation to ensure that it is performing its function of
internal quality assurance properly. The site, once duly assessed by
the internal notified body is then admitted to a portal maintained by
the third party who undertakes to ensure that the sites linked into the
portal are applying the internal quality assurance system with due care.
[14]
QMIC : www.health.tno.nl/en/news/qmic_uk.pdf QMIC (Quality in Medical
Information and Communication) is based on a structured
self-certification system with external reference. It was developed by
TNO (Netherlands Organisation for Applied Scientific Research) on the
advice of the Dutch Public Health and healthcare Council (RvZ).
4 Purposes of Implementation of Quality Criteria for Health related Websites
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
4.1 Educating Users
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.
4.2 Assisting searchers
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 (see for example OMNI or MEDCERTAIN).
[15] McLellen F Like hunger, like thirst: patients, journals and the internet. Lancet 1998,352 (suppII)39-43S
4.3 Educating Site Providers
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.
4.4 Assuring Quality
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.
5 Conclusions
The
eEurope initiative was launched by the European Commission on 8th
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 14th 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
- 22nd 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:
* implement the Quality Criteria for Health Related Websites in a manner appropriate to their website and consumers.
*
develop information campaigns to educate site developers and citizens
about minimum quality standards for health related websites.
*
draw on the wide range of health information offered across the
European Union and localise such information for the benefit of
citizens (translation and cultural adaptation).
* exchange information and experience at European level about how quality standards are being implemented.
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.
Glossary of Terms : Definitions and guidance notes on the terms used in the Quality Criteria
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
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.
Credentials
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.
Funding
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
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.
[16] Council Directive 91/250/EEC of 14 May 1991 on the legal protection of computer programs, OJL 122, of 17.5.1991, p. 42-46.
Personal data
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.
From the outline presented above, it is clear
that personal data exchanged in the process of any eHealth interaction
between a patient and healthcare provider or between healthcare
providers must comply with the requirements of the data protection
Directives.
Processing of personal data
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
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