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 NSAA Web sites has been evolving since 2002. The Guidelines for NSAA 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 NSAA Web sites during their evolution. However, the guidelines will be fully operational on the NSAA 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 NSAA 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.
Guidelines for NSAA Web Sites
The following guidelines apply to all National Surgical Assistant Association (NSAA) Web sites, including any Web sites with which the NSAA's name is associated in any way other than a simple link to any of the NSAA Web sites. These guidelines are the NSAA'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 NSAA 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 NSAA with expertise in Web-based content, advertising, privacy and confidentiality, and e-commerce.
Principles for Content
The NSAA is committed to providing member and health information of high quality via its Web sites. Visitors to NSAA 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).
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.
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 NSAA Scientific Publications' sites. All scientific publications and consumer site information adhere to these guidelines. As of publication of these guidelines, content posted on the NSAA corporate site will adhere to these guidelines as well.
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.
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."
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.
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.
Principles for Advertising & Sponsorship
These principles are applied by the NSAA to ensure adherence to the highest ethical standards of advertising and to determine the eligibility of products and services for advertising on the NSAA Web sites.
The appearance of advertising on the NSAA Web sites is neither a guarantee nor an endorsement by the NSAA 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 NSAA Web sites shall not be referred to in collateral advertising.
As a matter of policy, the NSAA will sell advertising space on its Web sites when the inclusion of advertising does not interfere with the mission or objectives of the NSAA or its publications.
To maintain the integrity of the NSAA 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 NSAA 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 NSAA, in its sole discretion, retains the right to decline any submitted advertisement or to discontinue posting of any advertisement previously accepted.
- Digital advertising may be placed on the NSAA Web site.
- Digital advertisements must be readily distinguishable from editorial content. If the distinction is unclear, the word "advertisement" should be added.
- Digital advertisements may appear as fixed banners or as rotating advertisements.
- 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.
- 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.
- Digital banner advertisements should be limited to 1 advertisement per screen view.
- Advertisements and promotional icons may not appear on the home page of the NSAA Web site (http://www.nsaa.net).
- NSAA 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 NSAA.
- Advertisements may link to additional promotional content that resides on the NSAA Web site.
- 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 NSAA Web site and that the NSAA 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 NSAA 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 NSAA Web site, please click on the "back" button of your browser to return to the site. The NSAA does not assume responsibility for content of other Web sites.
The NSAA will not link to Web sites that frame the NSAA Web site content without express permission of the NSAA; prevent the viewer from returning to the NSAA 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 NSAA reserves the right to not link to or to remove links to other Web sites.
- Methods of corporate funding should be described in the Web site's information about advertising or the digital rate card.
- 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.
- 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.
- 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 NSAA. The wording will be similar to "Produced by [NSAA publication] with support from [Company]."
- 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.
- 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 NSAA editorial content.
- The running foot acknowledgment will not be linked to any other materials.
- Other acknowledgments and disclosures may be required, as deemed necessary by the NSAA.
- NSAA 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 NSAA.
Principles for Website Privacy & Confidentiality
The following principles reflect the NSAA'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 NSAA) 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 NSAA believes that all site visitors should have the opportunity to opt in or out of allowing personal information to be tracked. In addition, the NSAA takes extensive measures to ensure the safety and security of its Web site servers and to guard against divulging private information. The NSAA 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 (the node) as well as less formal venues used by health care professionals, such as online discussion groups, chat rooms, and e-lists.
- 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.
- 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.
- 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.
- Collection, retention, and use of nonmedical personal information about site visitors may be offered to viewers when the NSAA 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.
- 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.
- 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.
- The NSAA 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.
- 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 NSAA site.
- The NSAA 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.
- 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.
- 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.
- Market research conducted by the site or its agent to enhance the site should be clearly identified as such.
- E-mail alerts and newsletters should contain an "unsubscribe" option.
Credit Card Privacy StatementPosted: Feb 2001
The NSAA 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.
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, NSAA 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.
Principles for E-Commerce
The NSAA 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 NSAA "Principles for Privacy and Confidentiality."
- A link or reference to the site's policies on privacy should be clearly visible.
- The security software and encryption protocol used on the site for financial transactions should be described.
- 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.
- 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.
- Users should be able to review transaction information prior to execution (information, products, and services listed; prices; totals; shipping and handling expenses).
- 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.
- 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.
- If a user's browser does not support a secure connection, no financial transactions will be permitted over the Internet.
- Response times for feedback and fulfillment should be clearly stated.
- Products and services will not be endorsed or cobranded by the NSAA or NSAA publications. Any product promotions must adhere to the "Principles for Advertising and Sponsorship."