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Principles governing ILSAA
Online
Table of Contents
Introduction
Guidelines for
ILSAA Web Site
- Principles for
Content
- Principles for Advertising and Sponsorship
- Principles for Website Privacy and
Confidentiality
- Principles for E-Commerce
The Internet has permitted physicians, other health care
professionals, patients, and other consumers to quickly access medical information
in unprecedented volume. Such access has the potential to speed the transformation
of the patient-physician relationship from that of physician authority ministering
advice and treatment (with sometimes questionable patient understanding and
adherence to recommendations) to that of shared decision making between patient
and physician. However, several substantial barriers remain before this relationship
can be realized. These barriers include equitable access to information, imbalance
between patient health literacy and the information provided, extreme variability
in the quality of the content, potential for commercial interests to influence
content, and uncertain preservation of personal privacy.
Web users have been warned regarding the incomplete,
misleading, or inaccurate medical information available on the Web. For
those seeking easy ways to identify high-quality, reliable information, some
Web sites and organizations have provided rating systems to evaluate quality
of information on the Internet. However, these systems often do not provide
the criteria used to assess quality, nor do they provide the reliability and
validity of their measures. Ultimately, assessing the quality of content depends
on the same factors that readers of print publications depend on: authorship
of the content, attribution to the sources of content, disclosure of funding
and competing interests, and timeliness of the information presented.
Among Internet users who seek medical information, personal
privacy was ranked as their most important concern. A recent study found
that while many Internet health information sites provide privacy policies,
most do not follow them. More than nearly any other type of information provided
via the Web, medical Web sites must adhere to strict personal privacy codes
to prevent individuals' personal medical information, including patterns of
use and interests, from involuntarily entering the hands of marketers, employers,
and insurers.
The dissemination of medical and
health information via the ILSAA
Web sites has been evolving since 2003. The Guidelines for ILSAA
Web Sites were created to facilitate the maturation
and implementation of these and other Web-based functions, while simultaneously
assuring site visitors' rights to privacy and confidentiality. Many of the principles
outlined in these guidelines have served the ILSAA
Web sites during their evolution. However, the guidelines will be fully operational
on the ILSAA
Web sites in conjunction with the implementation of registration and access
control in the near future. The primary goal in creating these guidelines was
to guide the development and maintenance of the ILSAA
Web sites. However, these guidelines may be helpful to others providing medical
information on the Web, as well as to viewers who want to know what to look
for as they search for reliable high-quality medical information.
These guidelines are not static; the constant evolution of the Web ensures
that guidelines will need ongoing reevaluation and frequent revision. We encourage
readers, viewers, others interested in the provision of online medical information,
and policymakers to review and comment on these guidelines. Future revisions
will consider these comments while retaining the guidelines' fundamental principles:
authorship, attribution, and disclosure must always be clearly provided; editorial
content must be current and the way in which quality is ensured explicitly stated;
advertising and commercial sponsorship must not influence any editorial content
and advertising must be easily discernible from editorial content; privacy and
confidentiality policies must be explicit and adhered to, ensuring that individuals'
rights to privacy and confidentiality are preserved; and e-commerce must function
efficiently and securely. Adherence to these fundamental principles will facilitate
acquisition and application of medical information by patients, the public,
physicians, and other health care professionals.
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Guidelines
for ILSAA Web Sites
The following guidelines apply
to all Illinois Surgical
Assistant Association (ILSAA)
Web sites, including any Web sites with which the ILSAA's
name is associated in any way other than a simple link to any of the ILSAA
Web sites. These guidelines are the ILSAA's
policy for its Web sites but also are intended to provide guidance for creators
of Web sites that provide medical and health information for professionals and
consumers. These guidelines are established with the understanding that the
World Wide Web is a constantly evolving technology, and the guidelines must
be reviewed and revised frequently to ensure that they reflect the current state
of technology and practice on the Web.
A standing committee composed of
ILSAA staff members will review the guidelines regularly and revise as necessary.
The committee will seek review and comment from an advisory panel of individuals
outside the ILSAA with expertise in Web-based content, advertising, privacy
and confidentiality, and e-commerce.
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I. PRINCIPLES FOR CONTENT
The ILSAA
is committed to providing member and health information of high quality via
its Web sites. Visitors to ILSAA
Web sites will be given information, navigational direction, and tools needed
to judge the quality, reliability, objectivity, sources, and funding of content
and to make effective use of content.
Definition of Content
Content is defined as all material (including text, graphics, tables,
equations, audio, and video) and menu/directional icons, bars, indicators, listings,
and indexes. These principles also address functions that support content (eg,
links, navigation, searches, calculations).
Site Ownership
Web site ownership, including affiliations, strategic alliances, and significant
investors, should be clearly indicated on the home screen or directly accessible
from a link on the home screen.
Copyright ownership of specific content should be clearly
indicated on screen and on items printed from the site.
Site Viewing
The site should provide information about the platform(s) and browser(s) that
permit optimal viewing in a location that is easy to find.
Viewer Access, Payment, and Privacy
Information about restrictions on access to content, required registration,
and password protection (if applicable) should be provided and easy to find.
Information about payment (ie, subscriptions, document
delivery, pay per view, etc) should be provided and easy to find. See "Principles
for E-commerce" herein.
Information about privacy should be provided and easy
to find. See "Principles for Privacy and Confidentiality" herein.
Funding and Sponsorship
Funding or other sponsorship for any specific content should be clearly indicated
and should comply with the "Principles for Advertising and Sponsorship" herein.
Content should be easily distinguished from advertising
as described in "Principles for Advertising and Sponsorship."
Quality of Editorial Content
Guidelines for editorial content review, posting dates, and sources were developed
based on experience with the ILSAA
Scientific Publications' sites. All scientific publications and consumer site
information adhere to these guidelines. As of publication of these guidelines,
content posted on the ILSAA
corporate site will adhere to these guidelines as well.
Review
Content should be reviewed for quality (including originality,
accuracy, and reliability) before posting. Clinical editorial content should
be reviewed by content experts not involved in creation of the content, and
the content should be revised appropriately in response to such review. The
method of review will be determined by individual sites. (For example, Scientific
Publications sites include peer review. Other sites rely on review by editorial
boards.)
The language complexity of the content should be appropriate
for the site's audience. Content should be reviewed for grammar, spelling, and
composition before posting.
A description of the editorial process and method of
content review should be posted on the site.
A list of staff members and other individuals (eg, editorial
board) responsible for content quality, other than anonymous peer reviewers,
should be posted on the site.
Date of Posting, Revising, and Updating and Timeliness
of Editorial Content
The dates that content is posted, revised, and updated
should be clearly indicated. Procedures for updating and removing time-sensitive
content should be developed, implemented, and periodically reviewed to ensure
that the updating and review schedule is appropriate. (For example, content
can be sorted by date posted and all content older than 6 months reviewed for
timeliness and accuracy.) An indication of significant revisions to any specific
content should be posted and may include instructions to discard copies of versions
previously printed or downloaded.
Sources of Editorial Content
Source for specific content should be clearly identified
(ie, author byline or names of individual, organizational, departmental, institutional,
agency, or commercial provider/producer).
Affiliations and relevant financial disclosures for authors
and content producers should be clearly indicated.
Individuals who post content in online discussions, chat
rooms, and e-lists should be instructed to disclose financial interests and
commercial funding or affiliations related to the subject of the posted content
discussion, chat, or list.
Reference material used to develop content should be
cited in a manner appropriate for the site's audience.
Linking
Intrasite content links should be reviewed before posting and maintained and
monitored. If links are not functional, links should be repaired in a timely
manner.
External site links should be reviewed before posting
and maintained and monitored. If links are not functional, these links should
be repaired in a timely manner.
External links to commercial sites must comply with the
"Principles for Advertising and Sponsorship."
Intersite Navigation
Sites should not prevent viewers from returning to a previous site.
Sites should not redirect the viewer to a site the viewer
did not intend to visit.
Sites should not frame other sites without permission.
Downloading Files
If content can be downloaded in a portable document file (PDF) format, instructions
regarding how to download the PDF file and how to obtain the necessary software
should be provided and easy to find. A link to such software should be provided.
Navigation of Content
Features that facilitate use of the site should be provided and easy to find,
and should include a site map or other site organizational guide, a help function
or frequently-asked-questions page, a feedback mechanism, and customer service
information (if available).
Each distinct site should provide a search engine or
appropriate navigation tool to facilitate use. If the site provides a search
engine, instructions specifying how to use the search function and how to conduct
different types of searches may be provided.
Graphics files should include a "mouse over" indication
of the graphical content. For large files, the space where the file resides
should include the size of the file. As a courtesy to the viewer, when possible,
when a large file can be downloaded by clicking, the viewer may be informed
of the size of the file before the file begins downloading and should have the
opportunity to cancel the download.
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II. PRINCIPLES FOR ADVERTISING AND SPONSORSHIP
These principles are applied by
the ILSAA
to ensure adherence to the highest ethical standards of advertising and to determine
the eligibility of products and services for advertising on the ILSAA
Web sites.
The appearance of advertising
on the ILSAA
Web sites is neither a guarantee nor an endorsement by the ILSAA
of the product, service, or company or the claims made for the product in such
advertising. The fact that an advertisement for a product, service, or company
has appeared on the ILSAA
Web sites shall not be referred to in collateral advertising.
As a matter of policy, the ILSAA
will sell advertising space on its Web sites when the inclusion of advertising
does not interfere with the mission or objectives of the ILSAA
or its publications.
To maintain the integrity of the
ILSAA
Web sites, advertising (ie, promotional material, advertising representatives,
companies, or manufacturers) cannot influence editorial decisions or editorial
content (as defined in "Principles for Content"). Decisions to sell advertising
space are made independently of and without information pertinent to specific
editorial content. The ILSAA
Web sites' advertising sales representatives have no prior knowledge of specific
editorial content before it is published.
Placement of advertising adjacent to (ie, next to or within) editorial content
on the same topic is prohibited (for the table of contents, a banner advertisement
must not appear next to the title of a related article). Just as a print advertisement
should not be placed next to an editorial page on the same topic, a digital
advertisement should not be adjacent to editorial content on the same topic,
either by linking or appearing adjacent in the content section of the same screen.
Similarly, just as a print reader can choose to read an advertisement or skip
over it, a computer user should have the option to click or not click on an
advertisement. Viewers will not be sent to a commercial site unless they choose
to do so by clicking on an advertisement.
The ILSAA,
in its sole discretion, retains the right to decline any submitted advertisement
or to discontinue posting of any advertisement previously accepted.
Advertising
1. Digital advertising may be placed on the ILSAA
Web site.
2. Digital advertisements must be readily distinguishable
from editorial content. If the distinction is unclear, the word "advertisement"
should be added.
3. Digital advertisements may appear as fixed banners
or as rotating advertisements.
4. Digital advertisements may not be juxtaposed with,
appear in line with, or appear adjacent to editorial content on the same topic,
or be linked with editorial content on the same topic.
5. Digital advertisements that are fixed in relation
to the viewer's screen or that rotate should be placed to ensure that juxtaposition
(as defined in item 4 above) will not occur as screen content changes.
6. Digital banner advertisements should be limited to
1 advertisement per screen view.
7.
Advertisements and promotional icons may not appear on the home page of the
ILSAA Web site (http://www.ilsaa.net).
8. ILSAA
logo may not appear on commercial Web sites as a logo or in any other form without
prior written approval by the individuals responsible for the respective areas
within ILSAA.
9. Advertisements may link to
additional promotional content that resides on the ILSAA
Web site.
10. Advertisements may link off-site
to a commercial Web site, provided that the viewer is clearly informed with
a buffer page that to proceed by clicking would mean the viewer would leave
the ILSAA
Web site and that the ILSAA
Web site does not vouch for or assume any responsibility for any material contained
on the Web site to which it links. The buffer page will display the following
statement:
You are leaving the ILSAA
Web site. If you wish to link to a Web site maintained by [company name], please
click below. If you do not wish to leave the ILSAA
Web site, please click on the "back" button of your browser to return to the
site. The ILSAA
does not assume responsibility for content of other Web sites.
The ILSAA
will not link to Web sites that frame the ILSAA
Web site content without express permission of the ILSAA;
prevent the viewer from returning to the ILSAA
Web site or other previously viewed screens, such as by disabling the viewer's
"back" button; or redirect the viewer to a Web site the viewer did not intend
to visit.
The ILSAA
reserves the right to not link to or to remove links to other Web sites.
11. Methods of corporate funding should be described
in the Web site's information about advertising or the digital rate card.
Sponsorship
1. All financial or material support for electronic collections
of articles, Web site content, and other types of online products (such as condition-specific
Web sites, online databases, or material on CD-ROM) will be acknowledged and clearly
indicated on the home screen or via a link from the home screen.
2. Acknowledgment of support will appear on the home
page, on the running foot of all pages, on any packaging and collateral material
included (eg, CD-ROM jewel case and companion print insert), and on any materials
used to publicize the online product. Content accessed through the site that
does not reside on the site (eg, abstracts or articles from another site) will
not include sponsorship information.
3. These acknowledgments will not
make any claim for any supporting company product(s). The final wording and
positioning of the acknowledgment will be determined by the ILSAA.
The wording will be similar to "Produced by [ILSAA
publication] with support from [Company]."
4. The home page acknowledgment of digital products may be linked to an on-site
"About [Company]" page or may link to the company's Web site through the intervening
buffer page referred to in "Advertising," item 10.
5. The "About [Company]" page may
be linked to other on-site pages provided by the supporting company. These pages
must be readily distinguishable from editorial content, must be clearly labeled
as provided by the supporting company, and must not be linked to related ILSAA
editorial content.
6. The running foot acknowledgment will not be linked to any other materials.
7. Other acknowledgments and disclosures
may be required, as deemed necessary by the ILSAA.
8. ILSAA
logo may not appear on the sponsoring company Web site as a logo or in any other
form without prior written approval by the individuals responsible for the respective
areas within the ILSAA.
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III. PRINCIPLES FOR WEBSITE PRIVACY AND CONFIDENTIALITY
The following principles reflect
the ILSAA's
commitment to maintain the Web site visitor's rights to privacy and the confidentiality
of personal information. In this context, privacy refers to the
right of the individual site visitor to choose whether to allow personal information
to be collected, by the host site (in this case, the ILSAA)
or by third parties, and to know what type of information is collected and how
that information is used. Confidentiality is the right of an individual
to not have personally identifiable medical or other information disclosed to
others without that individual's express informed consent.
The Internet has the potential to allow information about Web site use to be
tracked in aggregate (which can help site developers understand site use and
improve the experience of the viewer) and at the individual user level. Individual
user information can improve the visitor's experience of the site by permitting
personalization of the site related to the individual's particular interests
or concerns. However, tracking of personal medical and health information (ie,
medical conditions, health-seeking behaviors and questions, and requests about
drug therapies or medical devices or information pertaining to them) could breach
an individual's personal privacy and reveal an individual's health data.
Thus, health and medical Web sites
have a particular obligation to protect the privacy and confidentiality of individuals.
Patients and individuals with interest in particular medical conditions should
feel confident in obtaining information and using resources on the site, without
concern that such use will be identified with them without their permission.
The ILSAA
believes that all site visitors should have the opportunity to opt in or out
of allowing personal information to be tracked. In addition, the ILSAA
takes extensive measures to ensure the safety and security of its Web site servers
and to guard against divulging private information. The ILSAA
believes that Web site visitors should know who (eg, the site organization or
third party) is tracking personal information and the types of personal information
that are tracked and should have the right to opt out of such information being
collected at any time.
Protection of patients' and
members rights to confidentiality is fundamental to medical publishing. Health
care professionals must adhere to privacy and confidentiality principles to
legally and ethically share important information about medical conditions of
individual patients. The sharing of such information may improve clinical care
for the individual or improve the general state of knowledge about medical and
health care through medical research. Medical publications, whether in print
or online, must not reveal identifiable information about an individual without
that person's express informed consent. These principles apply to information
in medical publications
as well as less formal venues used by health care professionals, such as online
discussion groups, chat rooms, and e-lists.
Privacy
1. A link to the privacy policy of the Web site should be provided on the home
page or the site navigational bar and should be easily accessible to the user.
The Web site should adhere to the privacy principles posted.
2. Individuals responsible for Web sites that post advertising
should be aware of current technology and access possessed by third parties
that post or link to advertisements. Web sites should ensure that the technology
and access used by third parties adheres to the Web site's privacy policies.
3. The site should not collect name, e-mail address,
or any other personal information unless voluntarily provided by the visitor
after the visitor is informed about the potential use of such information.
4. The process of opting in to any functionality that
includes collection of personal information should include an explicit notice
that personal information will be saved, with explanation of how the information
will be used and by whom. The opt-in statement should not be embedded in a lengthy
document and should be explicit and clear to the viewer.
5. Collection, retention, and use
of nonmedical personal information about site visitors may be offered to viewers
when the ILSAA believes that such information would be useful in providing site
visitors with products, services, and other opportunities, provided such use
adheres to these principles and is within bounds of current regulations and
law (http://www.ftc.gov/privacy/index.html).
Individuals may agree to have such non-medical personal information collected
or may choose not to, with the understanding that opting out of having such
information collected prevents the site from being tailored to their particular
needs and interests. Such information will not include personal health information,
such as any information about medical conditions or medications purchased.
6. Names and e-mail addresses of site visitors should
not be provided or released to a third party without the site visitor's express
permission.
7. E-mail information, personal information about specific
visitor's access and navigation, and information volunteered by site visitors,
such as survey information and site registration information, may be used by
the site owner to improve the site but should not be shared with or sold to
other organizations for commercial purposes without the site visitor's express
permission.
8. The ILSAA
will use e-mail addresses voluntarily provided by site visitors to notify them
about updates, products, services, activities, or upcoming events. Site visitors
who do not wish to receive such notifications via e-mail should be able to opt
out of receiving such information at any time.
9. Non-identifiable Web site visitor
data may be collected and used in aggregate to help shape and direct the creation
and maintenance of content and to determine the type of advertisement to be
seen by site visitors while on the ILSAA
site.
10.
The ILSAA will not collect
and will not allow third parties to collect personal medical information (medical
conditions, health-seeking behaviors and questions, and use of or requests for
information about drugs, therapies, or medical devices) without the express
consent of the site visitor after explanation of the potential uses of such
information.
11.
A cookie is a small file stored on the site user's computer or Web
server and is used to aid Web page navigation. Two types of cookies are commonly
used. A session cookie is a temporary file created whenever a Web site
is accessed and is self-terminated based either on an expiration date (eg, 3
hours from creation of the cookie) or by closing the Web browser. A persistent
cookie is a permanent file and must be deleted manually. Cookies referred
to in the context of these Guidelines are persistent cookies. A cookie function
may be used on the site to track visitor practices to help determine which site
features and services are most important and guide editorial direction. The
cookie makes it possible for the user to access the site without requiring entry
of a user name or password, allows the user to view different restricted areas
of the site without reregistering, allows the user to personalize the site for
future use, and permits the user to make subsequent purchases without reentering
credit card information. Users who do not desire the functionality created by
the cookie should have the option to disable the cookie function, either by
indicating when asked that they do not wish to have a cookie created or by disabling
the cookie function on their browser. Individuals should be able to opt out
of cookie functions that permit tracking of personal information at any time.
12.
E-mail messages sent to a Web site may not be secure. Site visitors should be
discouraged from sending confidential information by e-mail. Site visitors sending
e-mail accept the risk that a third party may intercept e-mail messages.
13.
Market research conducted by the site or its agent to enhance the site should
be clearly identified as such.
14.
E-mail alerts and newsletters should contain an "unsubscribe" option.
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Credit
Card Privacy Statement
Posted: Feb
2001
The ILSAA abides by the privacy statement that
is published on its Web site. In addition, all credit card transactions
are conducted over a secure socket layer connection. Credit card information
is not stored or re-used in any manner. Only authorized personnel with
specific IDs and passwords can access credit card information solely for
the purpose of performing adjustments or refunds at the customer’s request.
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Confidentiality
Patients should be aware when they provide information about their individual
medical conditions in the context of such discussions that information may be
linked with a personal identifier. However, ILSAA
Web sites will not collect information about individual medical conditions without
the express permission of the site visitor. Physicians and other health care
professionals should be aware that any patient information reported in the context
of such venues must adhere to the confidentiality principles listed herein.
Moderators of such sessions should make every effort to ensure that listed material
adheres to the principles stated herein and, when in doubt, should query the
individual providing the information. If the individual is a patient providing
such information, the moderator should query the patient as to whether the patient
intends for the sensitive medical information to be revealed. If the individual
providing the information is a health care professional, the moderator should
query the professional as to whether the patient reported has provided informed
consent and state so.
Patients have a right to privacy that should not be infringed
without express informed consent. Identifying patient information should not
be published in print or online descriptions, photographs, or pedigrees (illustrations
of how a disease is expressed within an extended family for purposes of determining
possible inheritance) unless the information is essential for scientific purposes
and the patient (or parent or guardian) gives express informed consent for publication.
Identifying details should be omitted if they are not
essential, but patient data should never be altered or falsified in an attempt
to attain anonymity. Complete anonymity is difficult to achieve, and informed
consent should be obtained if there is any possibility as to whether identifiable
information may be disclosed.
When express informed consent has been obtained, it should
be indicated in the posted Web content.
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IV. PRINCIPLES FOR E-COMMERCE
The ILSAA
e-commerce principles are intended to ensure that users and purchasers of information,
products, and services on the site will have access to secure, efficient transactions
for online and remote customer fulfillment. All such transactions should adhere
to the ILSAA
"Principles for Privacy and Confidentiality."
1. A link or reference to the site's policies on privacy
should be clearly visible.
2. The security software and encryption protocol used
on the site for financial transactions should be described.
3. Users should be able to select whether or not the
Web host will retain the user name and password (ie, disable cookie function,
as described in "Principles for Privacy and Confidentiality"). Users should
be able to opt in or opt out of functions that track personal information at
any time.
4. A link or reference to customer service contact information
(e-mail, telephone, fax, mail), including hours of operation and time zone,
should be clearly visible.
5. The terms of use for e-commerce should require a deliberate
selection (accept/not accept).
6. Users should be able to review transaction information
prior to execution (information, products, and services listed; prices; totals;
shipping and handling expenses).
7. As a courtesy, following execution of the transaction,
users should be provided, on a page or by e-mail, purchase information (see
item 6 above) as well as shipping tracking number, if appropriate.
8. Users will be notified on-screen when entering or
leaving a secure site and will have the option to proceed or remain on the current
site.
9. If a user's browser does not support a secure connection,
no financial transactions will be permitted over the Internet.
10. Response times for feedback and fulfillment should
be clearly stated.
11. Products and services will
not be endorsed or cobranded by the ILSAA
or ILSAA
publications. Any product promotions must adhere to the "Principles for Advertising
and Sponsorship."
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