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The following
information about PatientView is intended to ensure that this site is
compliant with the document: Commission of the European Communities,
eEurope 2002: Quality Criteria for Health-Related Websites, Brussels,
November 2002, COM(2002) 667 final, page 6. In addition, this site complies
with all relevant European Community law.
Transparency
and honesty
Transparency of provider of site, including name, physical address and electronic address of the person and organisation responsible for the site:
PatientView Ltd, Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, Wales; company number 3944382; trading since June 2000. Electronic address of PatientView - info@patient-view.com. Company officer maintaining overall responsibility for PatientView - Dr Alexandra Wyke, Managing Director. Company officer maintaining overall responsibility for PatientView Website - Clive Nead, Editorial Director.
Transparency
of purpose and objective of site:
PatientView,
is a pioneering, UK-based, research and publishing organisation.
PatientView designs and conducts
projects that focus on healthcare issues. The aim is to provide patients
and patient groups with the information necessary to permit greater
choice and obtain improved care, as well as equip healthcare markets
with tools to improve patient care. Bringing together sometimes disparate
groups to achieve consensus on particular subjects is seen by PatientView
as an especially important part of its mission. PatientView projects
pay scrupulous attention to accuracy, detail and honesty. PatientView
is held accountable, not only by its shareholders, but also by its
advisory
board, which includes senior academics. In addition, PatientView has
an open-door policy with its patient-group project partners, who oversee
the output of PatientView's work throughout its development.
The purpose
of the PatientView Website is to communicate, in a simple and brief
manner, the range of PatientView products and services, and to give
patients and patient groups an impression of the healthcare-related
subjects analysed in PatientView projects. All new projects are given
an entry on the site soon after they have been completed (or, in some
cases, before they are completed). Most PatientView projects are widely
disseminated via popular or specialist press. Throughout the site, details
can be found of instances in which PatientView projects have been reported
in the press or on Websites.
Target
audience clearly defined:
NHS and other countries' national healthcare organisations; other healthcare
providers; physicians; nurses; pharmacists; national and intra-national
regulators; the media; industry (pharmaceutical companies, medical device
manufacturers, insurers, public relations companies and consultants);
and, especially, patients and patient advocacy groups. All of these
categories of audience find information of use to them from PatientView
projects.
Transparency
of all sources of funding for site (grants, sponsors, advertisers, non-profit,
voluntary assistance):
The PatientView site is entirely self-funded from PatientView's own
resources.
PatientView
itself earns revenue through sales of reports, through sponsorship of
projects and through the occasional grant.
PatientView ensures its independence and impartiality by accepting projects from a wide range of healthcare stakeholders. In 2005, PatientView received no more than 20% of its annual income from projects commissioned by the pharmaceutical industry.
PatientView was initially
subsidised through private seed-corn funds. None of PatientView's shareholders
come from the pharmaceutical industry. PatientView's founder, Dr Alexandra
Wyke, was employed for 20 years as journalist and then managing editor
by The Economist Group - a publishing organisation with strict
codes of conduct.
PatientView
has adopted a similar code of ethics, and has developed its own conflict-of-interest statement. The statement declares that no project can be funded by industry if vested interests interfere with the project's outcome. The financial backers of PatientView projects are made public from the outset. Where the PatientView Website makes no mention of the sources of funding for any particular PatientView project, that project will have been funded from PatientView's own resources (for example, PatientView's second HIV project, conducted January-March 2002 in conjunction with the British HIV Association and the Terrence Higgins Trust, received no sponsorship at all, and was therefore funded by PatientView
alone).
Authority
Clear statement of sources for all information provided and date
of source, plus name and credentials of all human/institutional providers
of information put up on the site, including dates at which credentials
were received:
This section of quality criteria applies less to the PatientView site
than to other Websites because the PatientView site is not so much an
informational provider per se - it is more a window on PatientView
projects, activities and ethos. The information generated from PatientView
projects is published in the form of reports, and is mainly own-source,
proprietory, primary data. Where information from another source not
PatientView's own is used in PatientView publications, clear attribution
is given (an example on the PatientView Website would be the structure
of this list of quality criteria: as mentioned above, it is based on
the European Commission's eEurope 2002 communication 667). The dates
of PatientView projects and publications are listed in the appropriate
places on the PatientView Website and in the publications themselves.
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:
Since conception in 2000, PatientView has been registered with the UK
Data Protection Commissioner to handle data. PatientView itself holds
information that would be subject to data protection legislation (mainly
respondent opinions generated from PatientView projects). This information
is either held on a small number of password-protected, proprietory
computers linked by cabling (not by wireless connectivity), or in paper
format - both types of data securely maintained at the main PatientView
registered office. No respondent's opinions are ever published in an
attributed form in PatientView reports (all are published anonymously
and in aggregate), except when respondents give their express permission
for their comments to be attributed. The PatientView Website generally
contains only outline details of PatientView projects, publications
and services, and therefore carries very little personal data, beyond
brief biographical facts about PatientView officers and advisory board
members. PatientView does not collect information on any of the browsers
of its Website.
Updating
of information
Clear and regular updating of the site, with date of up-to-date clearly
displayed for each page and/or item, as relevant. Regular checking of
relevance of information:
The entire PatientView Website is updated on a quarterly basis by the
PatientView editorial director. Individual pages are generally not updated
between quarterly updates, except when a new project comes onstream
or the information contained in a particular page needs to be changed.
The date of last update of the site is contained on the home page.
Accountability
Accountability - user feedback, and appropriate oversight responsibility
(such as a named quality compliance officer for the site):
Users of the PatientView Website can report their opinions to PatientView
by post, telephone, fax or email. PatientView address details are contained
on the site's home page. The final page of the site is a 'Contact us'
form, allowing site visitors easy email access to PatientView's electronic
address. The PatientView site's home page also notes that the named
quality compliance officer for the site is the PatientView editorial
director.
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:
PatientView has formed a number of relationships with responsible organisations
(to see ‘Relationships’, Click
Here).
The heterogeneity of campaigning group partners of PatientView makes these organisations difficult to define. But for the purposes of PatientView, suitable campaigning group partners must meet the following definition:
"The term 'patient group' fails to describe the members of the current grassroots-inspired health movement. Today's healthcare pressure groups embrace not just patients, but families and carers as well, and sometimes even individuals who are close to, and know, patients. People with a disability and older people maintain a similar interest in the condition of healthcare systems, and numerous groups exist to represent the interests of these individuals. Gender-based organisations specialising in male or female-oriented health issues are also prevalent worldwide. The healthcare lobby even includes healthy people who promote concepts of wellness. In fact, half of all health-focused NGOs claim some interest in disease prevention. Others still are interested in promoting alternatives to modern medical approaches. A better phrase to describe the members of the present-day user-driven healthcare revolution than 'patient', therefore, is 'health campaigner'. A health campaigning organisation is any group that claims to represent the interests of patients or the public in matters of health or healthcare. Such groups are led by the users of healthcare systems--not health professionals or staff from different categories of stakeholders. The definition should be seen as incorporating statutory bodies appointed by government or healthcare providers, to speak up for and defend the interests of people using healthcare systems." [A. Wyke, 'Consumer-driven healthcare has arrived, and will transform pharma markets', Scrip, April 2006.]
Editorial
policy - clear statement describing what procedure was used for selection
of content:
PatientView
is an independent organisation. PatientView is transparent, and publishes
the results of its findings. All editorial content of PatientView publications
and the PatientView Website remains under the sole control of PatientView
(with the exception that current patient group partners are given the
opportunity to dictate factual changes of content to PatientView reports
being readied for publication). Material placed on the PatientView Website
is chosen by the PatientView managing and editorial directors solely
to give information about PatientView publications and projects. Other
organisations are mentioned on the site only insofar as they have provided
aid in conducting projects (partners), have reported PatientView projects
or publications (the media and others), have sponsored or given grants
to projects (sponsors), or have maintained some form of intellectual
relationship with PatientView. If any publicity accrues to any organisation
(other than PatientView) as a consequence of material placed on the
PatientView site, such a result is accidental and entirely unintended
by PatientView.
Accessibility
Accessibility - attention to guidelines on physical accessibility as
well as general findability, searchability, usability, etc:
The PatientView site is a relatively simple creation. It is designed
in a fairly straightforward fashion, to minimise the necessity for users
to scroll extensively. The site's buttons and pages number less than
those on many other sites. Navigation is uncomplicated and often linear.
While links to other related sites do exist on the PatientView Website,
PatientView is inevitably unable to vouch for the general usability
of those sites. Access to the PatientView Website itself is possible
either directly, or through most major search engines.
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